Just the 6 of us

It's been awhile

2011-10-04T18:59:00.000-05:00

Sorry for the lack of the blog update; but life has gotten in the way of blogging. I have lots to share, but time is not on my side right now. I do have time to show you a sweet picture from a photo shoot my friend Beth did in our home a couple weeks ago. Does anyone know who told this little boy it was ok to look so grown up??

First Day of School

2011-08-15T23:03:00.000-05:00

Today marked the first day of school for the year. Oh, I was not ready for school to start; not ready for my babies to be gone again (other than when they fight!) and not ready for cooler weather and shorter days. But alas, no one asked me if I was ready; and time marches on.

Obligatory 1st day of school picture on the front step..it's a tradition!

Mason-2nd grade

Megan-5th grade

and Micah-8th grade (who thinks he's too big for 1st day of school pictures)

Today just may be the day

2011-08-03T10:17:00.000-05:00

Since Friday, a lot has happened. I was told, through the resident, that our surgeon was on vacation, and the other surgeons weren't willing to operate on his hernia because he wasn't there patient. Well, I came unglued then. I try very hard to not lose my marbles while I'm in the hospital, but I wasn't ok with that answer. If the hernia truly was causing the problem; I wanted it gone now. After much visiting (and possibly a few tears on my part...I'll never tell) with the charge nurse; she called the surgeons and brought them directly to my room. After chatting with them, I realized it was a communication error. Yes, they didn't want to operate on him, but it was because they didn't know what to do with the hernia. It didn't have intestinal involvement (it's filled with fluid from tip of his shunt), but because it was pressing on the esophagus, they didn't know what would be the best answer for Matthew. He is a "fragile" child, and they didn't want to cause more harm than good. I completely understood. Communication is a brilliant thing! Our surgeon wouldn't be back till Wednesday, and we would talk then.

Saturday and Sunday were pretty much lazy days. Nothing new happened over the weekend; and we talked about dismissal Monday. Matthew's retching had improved and we were comfortable with him being home, and figuring out where to go from here once we were settled.

Monday, as meds were being ordered, dismissal papers signed; Infectious disease doctors walked in the room. Matthew had developed a cough that morning, and he was really mucousy. They took a listen to him and said that they thought he had pneumonia. A chest x-ray was done with a comfirmation of pneumonia. Twice now this little boy has skirted dismissal! They doc's wanted to keep him another couple days to see which way the pneumonia would go, and give him (yet another) IV antibiotic for a few days before we switched over to oral antibiotics. I reluctantly agreed. I didn't want him to get home and get significantly worse. By evening he was on oxygen anyway.

Yesterday we were able to visit with palliative care again (they've been wonderful...I would suggest ANYONE with a chronically ill child...even if don't have a child as fragile as Matthew....to get in touch with them...they are fantastic) and discuss our desires and wants for Matthew. They helped encourage the medical team to allow us to go home. Not that they have been against it; but it just works so nicely to work with a team. So today, barring that Matthew doesn't change his mind, we are getting outta here! 29 days is too long!

It's friday...

2011-07-29T12:07:00.000-05:00

and we are still here.

Wednesday, due to all of the retching, they did a shunt series (x-ray) and a CT of the head to make sure his shunt was working properly. That checked out fine, but I found out Wednesday night that on the xray of his shunt, they saw a "mass" behind his heart. Matthew was already scheduled for an MRI of his brain, and his botox on Thursday, so they added on a CT of the chest. I was a little freaked. I mean, the kid doesn't need one more thing and the "c" word was brought up. I didn't want to freak though, and didn't even google it (which is a first for me).

Thursday afternoon, we learned the results. His MRI is unchanged (they were looking for a chairi malformation..which can cause retching) but his CT showed a diaphragmatic hernia that was fluid filled, and pressing on his esophagus. The doctors seem to think it is very plausible that this is what has been causing his retching at least for the last few months. It's also possible that it isn't the case, but we gotta hope, right??
Surgery came by last evening and was concerned it was fluid filled. It didn't make clinical sense to them (I didn't understand why it puzzled them, but asking them just confused me more), why there was fluid in it, so they ordered an upper GI, and possibly an aspiration of the fluid from it (don't have any clue how they'd aspirate it, but it sounded not comfortable).

Preliminary upper GI results from this morning say that there is no stomach involvement, which I believe is good. I got a chance to talk the radiologist, and asked her about the fluid in the hernia. What she said made complete sense. Because he has a shunt that empties fluid into his abdomen, fluid is going to get caught in the hernia. Why didn't I think of that? It's about a 5cm all the way around hernia, which I guess I understand is fairly large for his size. The surgeons seem to be dragging there feet to do anything about this on a Friday, but I am not done fighting this battle, especially since everyone seems to think this is causing his retching, and is making him miserable.

And as an added bonus {insert sarcasm}, they saw another clot in his jugular vein on the CT. Infectious disease says that now we have a total of 3 clots (one in his heart, one in his subclavian vein, and now one in his jugular) that there is a good possibility of a clotting disorder. WONDERFUL; exactly what Matthew needs; one more specialist.

We were hoping this weekend we'd be able to go, but it looks like that won't be the case. It's gonna be a few more days at least.

He is still requiring a LOT of ativan to keep him somewhat comfortable (enough to sedate a horse, actually...and that isn't an overstatement. The kid metabolizes it like crazy!), so we're hoping the surgery and fixing the hernia will make a big difference for him. I think he's trying to set a record for the amount of procedures needing anesthesia in one hospital stay.

Still here

2011-07-27T00:49:00.000-05:00

Matthew is still at Children's. Retching, has become a real problem. He is requiring 7 times the normal amount of his medication that we use to control the vomiting. He is scheduled for an MRI and rebotoxing his salivary glands (this helps with his secretions) on Thursday. He has been back on TPN since Monday, and the retching is no better. The doctors are unsure now if it is brain related, GI related, or secretion related. This is the only thing keeping us in the hospital. We're praying they'll figure something out on Thursday that will help him.

His arm is not swollen anymore, so I believe the clot in his arm is gone. I believe they will look at his heart again before we leave to see if the vegetation is smaller in his heart. They do not want us going home on TPN and neither do we. That is what started this whole ordeal in the beginning. When he is ready for discharge, he will go home on two IV antibiotics for the next (at least) 4 weeks.

So basically, we've gotta get his retching under control. It's worse than it ever been (and that's saying a lot), but he still manages to smile in between. He's a strong kid!

pluggin along...

2011-07-22T00:07:00.000-05:00

Matthew is slowly showing progress each day. By Monday, I got my first smiles from him.

His arm is still puffy from the clot in his vein, but today is the first day I can say that I think it's starting to get smaller.

His kidneys are back working in full function. He is getting two different antibiotics in his IV. One every 8 hours and one every 12 hours
He is having lots and lots of retching; more than we've ever seen before. We've been problem solving for the last few days, and we think we may have finally figured out a couple of reasons why 1) since he was so sick, his brain is still agitated. This is common when brains aren't 'wired" correctly. This should get better as Matthew heals. 2) we had to take him off the medication that he takes for gastric motility as it can interfere with one of the antibiotics and cause "sudden cardiac death"..yikes. The doctors are collaborating and trying to figure out the motility issues, and we are giving him extra ativan while his brain is "angry". That has seemed to help today.

Daily rounds have taken on more of a light hearted tone. The doctors today told me how worried they were that Matthew might not make it. . It's nice to hear them laughing and joking, versus talking in quiet serious voices.

Steve, in his true ornery fashion, is back and at it as like nothing happened. They have not come up with a cause for his temporary paralysis and weakness, but are guessing that it was a stress response (he denies this..of course) He sure scared us (and himself if he is completely honest)

I'm going home this weekend to work, and Steve is taking bedside vigil with Matthew. It will be good to get away for a while, but I will miss my little guy. I miss my big kids so much. They are in SD and having a good time, being spoiled rotten. I can't wait to get home, and spend the last couple weeks with them before school starts. We sure are hoping by the beginning of next week we can go home!

7/17

2011-07-17T23:27:00.000-05:00

Just gonna give some bullet point updates:

Steve came home from the hospital today. He slowly gained the ability to control his arms and legs on Saturday. This morning he was able to walk with the help of the nurse. It is still very exhausting, slow work for him to walk at all. He is home with a walker, and is only moving from bed to bathroom or chair. He is very weak, but each day we've seen improvements. We have no idea what caused this attack on his body. West Nile Virus testing will be a couple more days before results, but otherwise everything else is coming back negative. He did have mono a month ago, so maybe his body was still weak from that and some weird virus got him, we don't know.
Matthew is continuing to get a little better every day. Last night, His left arm got really puffy and he acted like it really hurt him. The doctors looked at it and ordered an ultrasound. The ultrasound done last night (about 1 am Sunday morning) was inconclusive, but this morning around 8 am the radiologist requested to re do the ultrasound himself, and found a 2cm clot in his subclavian vein attached to the port and the vein. His port still functions, the clot is on the other side of the port, maybe best to explain it as "upstream" from the port, but none the less, the 1 week old port must come out. This means surgery AGAIN for Matthew. Grr. The hardest part is now going to be figuring out what kind of venous access to put in. He is not a PICC candidate because the left arm has a clot and the right arm is where the origional infection was. He most likely will get a femoral central line or a intrajugular line. Both have risks, but without venous access, Matthew most likely won't be able to fight off the infection. He was also started on lovenox to prevent any other clots from happening, and the hemotology doc's want a couple days of that on board, and then off it a couple days before they can do surgery. Not sure when this surgery will happen.
I was able to get out of the hospital and spend some time with the kids and Steve at home. Chrissy was able to stay again with Matthew for the afternoon, and I also got a much needed nap. My parents took the kids back to South Dakota tonight for a week or two, and Steve's mom will stay one more day with Steve, and then we're going to (hopefully) coerce him to come and stay up in the hospital with me for a couple of days so I can keep an eye on him.

Thank you again for everything you are all doing for us. We have the best support anyone could ask for. From church family, friends, family and readers of our blog...we are the most blessed!! God is good!

7/15

2011-07-15T23:30:00.000-05:00

Too tired to type much, but didn't want to leave you hanging. Steve is stable. He is at St. Elizabeth's. Not sure what is wrong. Soon after his chest pain, he had weakness over all of his extremities, and was unable to move them. His heart checked out normal, they didn't think he had a stroke, but couldn't figure out why the paralysis. He was able to feel us touch, but unable to move. He could only move his head, and he couldn't even take in a deep breath. He went into a very sleepy spell in the ER where they couldn't even wake him up; even pinching him. He is resting better tonight, and when I left, he was able to move his hands. I had to feed him supper tonight, cuz he couldn't do that. I did get an update about 10:30 tonight, that he was moving his hands to his face. UNBELIEVABLE! Thank you for praying. I will do a better job of updating once I get some sleep.

And Matthew had an okay, a touch better again. He is resting comfortably and his body is fighting. I had so many offers today from friends to come sit with Matthew (wow!) and our friend Chrissy spent the day with him.

We couldn't have gotten through this without all of you! Thank you so much for praying, visiting, texting and loving on us! WOW.

Good night.

URGENT!!

2011-07-15T10:40:00.001-05:00

Steve just called from home, he was having chest pain and I made him call 911. He has a history of heart issues. PLEASE PRAY!

Today's update

2011-07-14T17:16:00.000-05:00

Yesterday was hard. Real hard. Lots of doctors; lots of decisions, lots of different opinions on what would happen. Nothing a parent wants to hear. My mom and dad drove in from SD. Steve came. Matthew was sick. We had lots of Dr.'s coming in and out. We couldn't keep Matthew's fever down, and he was pasty white with cold hands and feet. Matthew was septic. The piece of bacteria in his heart had reinfected either his blood or his lungs or both. Some doctors painted more of a dismal picture than others. After we'd collected all the data from the doctor's and prayed; we felt like we needed to decide what would be best for Matthew. Comfort was number 1. Medications were ordered for comfort. Antibiotics were changed and added. We learned that his kidneys had taken a hit from the sepsis, although they were still producing urine. We will monitor his kidneys and his breathing status closely. We will help his body breathe if he needs it. We will give his body a good chance to fight this.

He had a decent night with only one bought of pain in the evening that was quickly remedied with Morphine. He has slept almost the whole time, and that is ok.

Today, looks a touch improved. He has spells where he is breathing easier. His color is a bit better. He recieved a blood transfusion today because his hemoglobin is low. He is still getting low grade fevers and he is still asleep. But he is breathing on his OWN and still making urine.

Thank you Thank you everyone for praying, for sending texts, for your kind words on facebook. It is overwhelming and I have no words to describe it. Please continue to pray. God is listening. He always does.

We have prepared ourselves (if one can do that) for the worst; but are pleading to God for the best. When you have a child with special needs, you always wonder "when, and how". I know Matthew's lifespan will not be as long as you and I. We know that one of these times, God will not answer our prayers in the way we are asking, but it will still be in His will, and His time, and God will still be good. He's good all the time. I, of course am praying that he will be healed; but even more I am seeking God's will. He knows what is good for us. Matthew's little life has lessons for us, and we do not know what his struggles will teach someone else. And this life is not Matthew's eternal home. He has so much waiting for him; there will be many "stars in his crown". He is a fighter and a blessing. We love him very much, but we are the ones that will have it hardest when he isn't here; not him. So, the only, ONLY thing we as parents are trying to do, is not be selfish.

Please continue to pray. Your kind words mean so much to us all. If you are wondering what you can do for us, please pray. Pray for strength, wisdom and healing. I will do my best to keep all updated so you know how to pray.

Very sick

2011-07-13T13:09:00.000-05:00

Matthew has gotten very sick over the last 12 hours. He is spiking horrible fevers, and his kidneys aren't working very good anymore. He is very very sick. His skin pale they are saying he is septic. Please pray for our little guy. We are so scared for him.

Going home...or not

2011-07-12T22:21:00.001-05:00

Today was supposed to be the day we were going home. The doc's had decided this morning to do an echocardiogram of his heart to make sure that no bacteria had deposited itself in his his heart. The term they used was called "vegetation". While the echo was ordered for around 9am, it took till almost 2pm for them to do it. We had gone over dismissal orders and I'd showered and packed our bags, formula and supplies had been brought by from home health. When I was watching the echo, I thought something looked funny in his right atrium. Something big was bouncing around in there. I don't know much about the heart, but it didn't look like a valve, and there wasn't something like it on the other side. The tech also measured it, so I had my suspicions,but I tried to remain positive.

Around 4, the doctor came in and told us they had found a "vegetation" of bacteria in his right atrium and they would consult with cardiology and infectious disease. The cardiologist came in and gave an indepth explanation. Luckily, they didn't think they needed to go in and surgically remove it. He hadn't looked at the echo, but was going to look at it, and was hoping we could also stay away from heparin. We would need to do 6 weeks of antibiotics, and frequent echocardiograms. He wanted at least the first three weeks to be done from the hospital. If you can imagine each time the blood swishes through the heart, it comes in contact with the bacteria; so it will be important to keep the antibiotics going for a long period of time. Also part of this bacteria can break off and go to the lungs and cause what's called a pulmonary embolism. That also isn't good either. Eventually this piece of growth should shrink and become more like a scar, and then it won't be harmful.

About 1/2 hour later, the doctor came back and they felt like it was necessary for him to be on heparin, which means he needed to go to modified ICU.

Once we moved floors, we talked about the fact that his antibiotics and heparin could not go in the same line together. Matthew only has one line. They talked about an IV, but Matthew doesn't have any place left to put an IV in. His last IV was in his finger, not a good place for antibiotics OR heparin. So the decision was made tonight to put him on Lovenox instead of heparin, which can be given as a tiny shot in his leg twice a day.

Here are some of the things swimming around in my head. First, Matthew is enrolled in Palliative care here at the hospital. I don't think I've ever talked about it. Palliative care IS NOT hospice. Palliative care is about helping us make really good decisions that are best for Matthew, and don't always mean doing everything medical possible. That gives us liberty to easily say NO to things, or how can we do this so Matthew does not have to be in the hospital so much. It's given us the opportunity to have discussions with care givers beforehand about what we would like for Matthew. It helps us give Matthew quality, and with maybe the sacrifice of quantity.Making it reasonably safe for Matthew, but maybe taking risks that one may not normally take. Case in point: Letting Matthew go home on IV antibiotics, knowing that there is a chance part of that could break off and be potentially lethal. If he were in the hospital, he would have a team readily available to do EVERYTHING to him; at home, he would be comfortable. As a family, we want Matthew to be at home as much as possible and take some risks, knowing that Matthew is happier at home. Make sense? Maybe not, but we have chosen this for Matthew. I personally know that I want quality good time while I am on this earth..not just to exist here.

This new finding is not something to take lightly, there are lots of complications, (some that I haven't mentioned) that could arise from this. We are being very cautiously optomistic that he will pull through this like a champ. He has overcome lots of things in his short little life. He IS a fighter.

Events over the last week...a.k.a we're in the hospital again.

2011-07-10T23:27:00.000-05:00

We're in the hospital again. Matthew has been hospitalized since last Wednesday with a really horrible infection. A lot has happened, and I have neglected the blog; finding it easier to update facebook. However not everyone that loves Matthew is on my facebook, so I need to get the blog updated. I'm going to give a short break down of the last few days.

Last Wednesday June 29th, during the morning, Matthew's port needle came dislodged while his TPN was being infused. As a result, a large amount of TPN was infused under his skin instead of his blood stream. We caught it when he started screaming. It's a very painful thing to happen. We called his nurse and she sent us to the ER. TPN can kill/damage skin tissue; so it's a dangerous thing to happen. The ER sent us home, saying just to watch it, and bring him back if the skin started changing colors
Over the next couple days we had multiple problems with Matthew's port needles not wanting to stay in an getting dislodged, luckily not while the TPN was going though.

Monday, when the nurse came to the house to draw labs from his port line, the line would not draw. She made us an appointment for Wednesday morning for another nurse to come out and put TPA in the line. This is a medicine that breaks up blood clots in the line and allows it to draw.

Wednesday while the nurse was at the home, Matthew became very fussy and started throwing up uncontrollably. I gave him medicine to stop the vomiting, and it only got worse. By the time she had put the medicine in the line, Matthew started feeling warm. He had a fever of 102.4. The nurse called our doctor and left a message. She left (around 10 am) and had to come back in 2 hours to remove the medicine from his port. 1/2 hour later, he was breathing rapidly and I put his pulse ox on to check his sats. His heart rate was way up, but his oxygen was still good. By 11:30, (1 1/2 hours after the nurse left)Matthew couldn't keep his oxygen levels up and I put him on oxygen. His heart rate had climbed to 190. He was miserable. By noon, he had a fever of 105. I had already given tylenol and we applied cool washclothes to his head and body. When our nurse came back, she drew the medicine out and drew the bloodwork we needed. But it was also obvious we needed to get Matthew to the hospital, and we called 911 since I had no one at home to help me transport him.

Once at the hospital, they drew bloodwork, gave ibuprofin, antibiotics, and admitted us. We ruled out a bladder infection, and his chest xray looked a bit different from the ones he's had in the past, but not much. His fever came down and he rested pretty comfortably the rest of the day.
Thursday around 3 am, Matthew woke me up crying uncontrollably. Then his whole body got really stiff, and ice cold. It was obvious he was getting the chills, but he also wasn't responsive. The nurses administered ativan, and 15 minutes later, he came out of it. At that point he didn't have a fever, but within 15 minutes, he spiked a fever of 104, his heart rate was in the 200's, and he needed more oxygen. It took us till morning to get his fever under control.
Thursday late morning, the decision was made to transfer him to Childrens' hospital. His initial blood cultures were saying he had a staph infection in his blood stream (bacteremia). We also changed antibiotics to reflect the type of infection he had. Matthew was transferred by ambulance and arrived at Children's around 12:30.
Although it was evident Matthew was sick, and I was sure he had an infection in his port, we were still waiting for further cultures to tell us for sure. Friday, Matthew's port again wasn't working, and the nurses were going to remove the needle and put a longer one in. When they removed the needle, pus came out of the needle site. We now proved the port infection. Surgery was called and they scheduled surgery ASAP to take the port out. He went to surgery around 7pm.
Since Matthew would not have any IV access after taking the port out, we had to get an IV in him. The anesthesiologist was kind enough to put him to sleep first, and found 1 vein; in his finger. They put the itty bittyist needle they had in it, and it went in. The port was taken out, and at the same time, changed his g-tube out to a g/j tube (in his belly). We knew he'd need nutrition, and we couldn't run TPN though the finger IV; so we decided the only reliable way to get him nutrition was to put the g/j tube back in. That allows the food to go straight past his stomach, into his intestines, so he can't throw it up.
Matthew came through surgery with flying colors; slept all night friday night, all day Saturday, all night Saturday night. By today (Sunday) at noon, the doctors were concerned. He hadn't woken up, his belly was distended, he was peeing or pooping. Lab work was done, a CT scan was done(to rule out shunt malfunction), and lots and lots of prayers were sent up.
Just about the time every test was done to try to figure why he was sleeping, he woke up. Woke up smiling! We threatened him with an enema, and by the time the nurse got it from pharmacy, he had done the job on his own. We threatened him with a catheter, and 1/2 later he peed. Thank you everyone for praying! Keep them up; we still have a long way to go!
Tomorrow at 3, Matthew will have another port placed, as he still needs IV antibiotics, and no one can believe the finger IV is still working (I know why, though...prayers!) and whenever he gets sick in the future, we will need IV access. He is tolerating feedings well so far at 1/4 strength. I will be happy to say goodbye to TPN.

I'm not sure how much longer we will be in the hospital, I would think Wednesday would be the soonest. I will try to keep my blog updated. Now that I am caught up; it shouldn't be such a big task. I've also got some things to update on from before Matthew got sick, but that will have to wait till we get home as my pictures are there.

Another Blog

2011-06-27T08:15:00.000-05:00

I have started a second blog {call me crazy} so I can keep a record of things that I sew as gifts and such. The first person I knew that quilted kept a photo album full of pictures of all the quilts she made. This is my modern way of doing that. Here's the link: check it out if you'd like! madebymissjill.blogspot.com

A crazy couple of weeks.

2011-06-22T23:46:00.000-05:00

We've had a crazy couple of weeks. We got a call the day after Memorial Day from Boston Children's GI clinic saying they would like us to come for some GI testing the end of the month. Matthew's GI doctor had put him on the waiting list to see these GI specialists back in November. We knew it would be awhile, so when we got the call we scrambled into action. As I started working on getting everything in place (medical records, out of state medical coverage, plane tickets, lodging, etc) I ran into one obstacle after another. It was a nightmare. I could write a whole book about the hours of headache trying to get to Boston was. Steve and I both prayed that if this wasn't meant to be that God would close the doors. It sure felt like it wasn't meant to be, but I promised I would be diligent with my endeavors and leave the rest to God. Steve was sick the whole week of the 6th. He couldn't shake it. He was tired; exhausted really. He had a sore throat, and a scratchy cough. Finally, the 13th, he called me and told me to make him a Dr. appointment. He couldn't give any specific symptoms, but just didnt' feel right. The day after the appointment, he got a call from the office that his la test came back that he was positive for mono.

Wednesday night I put Matthew to bed early, and he slept all night, all day Thursday, and all night Thursday night. Matthew was supposed to go play at our friend, Chrissy's house on Friday, so I could take the kids to my work picnic. Chrissy does respite/ childcare for other kids in her home, most that have special needs like Matthew. We knew that if Matthew was sick, the last thing he needed was to go to Chrissy's. We sadly cancelled our trip and made a Dr. appointment instead. Matthew's mono test came back positive, and I was a bit concerned how Matthew would handle this illness as did his Dr. He was already on oxygen due to his general weakness. She drew some blood and sent us on our way with instructions to watch him closely and advised us travel would not be in Matthew's best interest. The door to Boston had closed. I knew this was our sign.

Meanwhile, a friend of mine had agreed to watch my other kiddos at a local indoor play area, so they wouldn't totally feel like we missed out of a fun day. While there, Micah was jumping in a bouncy house that had a basketball hoop in it. While dunking a basket ball, his teeth somehow got tangled in the net (I'm envisioning Michael Jordon) and then fell backwards, and completely ripped out his front tooth, root and all (ouch). Steve to the rescue (I was at the Dr.'s office with Matthew), took Micah immediately to the dentist and he pushed it back in the gum. He may still need a root canal, but for now he has a sore mouth and a delicate tooth.

My parents came for the weekend, and we had a blast. We haven't seen my parents since Christmas, so it was wonderful to have my parents here. After they left, I decided a nice Father's day present would be to clean up our VERY MESSY garage. I started by picking up all the shovels, rakes and such laying on the ground and then I started sweeping. In my diligence, I missed a garden hoe that was laying on the ground, and I stepped on the edge of it; and the handle swung up and whopped me HARD in the face. Immediately I felt blood. Lots of it. I thought for sure I'd knocked out all my teeth. I was sobbing and the kids went running for Steve. After I collected my self (calling Steve outside was not the right choice; he freaked with all the blood) and finally got up the gumption to look in the mirror, I was missing part of a front tooth and had a pretty cut up, bruised, fat, lip. I was so sad about my tooth. We decided it would be best to bubble wrap the rest of the family, since we were dropping like flies :)

The "toothless"--Mason had just lost a front tooth

A close up of my ouchie...the underside of my lip looked more like hamburger and lots of bruising.

Lucky for me, Micah had a return appointment to see the dentist on Monday, so I called early, and asked if I could come with and let the dentist see what he could do. { I silently wondered what child of his we were going to be putting through college with all of our recent dental visits. :)} I'm now sporting a temporary crown, and will get my real tooth in a couple of weeks. My lip still is pretty sore and black and blue, but nothing a little lipstick can't fix.

So that's what's kept us beginning this first month of the summer. Next month we are planning a vacation, the kids are going to camp, my parents are going take the kids for a week, and Steve and I will be celebrating our 15th wedding anniversary. We're also going to try to camp a weekend here or there.

Birthday pics

2011-05-25T00:56:00.003-05:00

Matthew's birthday was pretty low key. It was the big kids last day of school; so we picked them up and pretty much just hung out at home all day. It pretty much rained all day; so we stayed inside. For supper we grilled and had my brother and his girlfriend over. It was a quiet evening with lots of "happy birthday's" sung. It's Matthew's favorite song; last year we spent his birthday in the hospital due to the fact he had spinal cord detethering surgery, and we sang that song to him a million times. This year he proved he still loves it!

Singing Happy Birthday to Matthew!

He was all smiles most of the evening

He joined us a the supper table for yummy food!

Because he's our angel; he got an angel food cake for his birthday; topped with whip cream and strawberries. YUMM!!

Happy Birthday, Matthew !!

2011-05-20T11:00:00.000-05:00

{More pictures to follow Monday!}

Matthew's new hang out

2011-05-13T17:23:00.003-05:00

Matthew has a new place to hang out. Last year for his birthday, we bought Matthew and Ikea Ekorre swing. It's kinda like a hammock, and a swing all in one. Steve finally got around to hanging it in the house this weekend (almost 1 year later) and Matthew LOVES it!

It hangs right in the middle of our living room.

Here's a picture from a distance so you can get an idea of what it looks like. It's held up in two studs with 5" lag screws.

I expect many happy hours spent swinging and hanging out by Matthew!

My teenager!!

2011-05-05T22:56:00.005-05:00

Look at this handsome boy! I cannot believe I now am a mother to a teenager!

I get very nostalgic on birthdays. We pull out the photo albums for the bigger kids (and the external hard drive for the younger ones...we don't print off pictures like "the good old days")

I scanned in three of my favorite pictures from the 1st album (birth to about 18 months)

Micah and I- I think he was two days old

Family picture-Micah was about 6 or 7 months old

About 18 months old

I just realized all of these pictures I picked as my favorites were taken in my parents home. How interesting.

Happy, Happy Birthday Micah!!

The first of May

2011-05-01T11:41:00.000-05:00

Just a quick update for everyone. Matthew is, well, Matthew. He got a cold 2 1/2 weeks ago; which we managed at home for about a week before he developed pneumonia. He got a trip to the local ER, and ambulance ride to the Children's hospital. The ambulance ride turned out to be a little traumatic for all parties involved when he decided to stop breathing in the ambulance shortly after we pulled out of the hospital. The episode was short lived; but the ambulance driver drove ALOT faster after that. I think Matthew didn't think we were going fast enough :)

He only spent 24 hours in the hospital (thanks to some really great IV antibiotics), and was dismissed to recover at home, since we have oxygen, and IV supplies at home. He was on oxygen about a total of 10 days; and is almost fully recovered now.

We have gotten approved by the state for more nursing hours; and I am now able to sleep ALL night 5 nights a week. TRUE BLISS. I am now a spoiled girl. I LOVE it. Matthew's night nurse is fantastic and takes great care of him. We are getting "day" care 2 times a week too with the same nurse we've had for over a year; so we are truly enjoying the wonderful team we have.

The other kids are counting the days till summer break (3 weeks) and I am looking forward to it too!

In 5 days I will have a teenager. Oh MY. I am not ready for that.

Hopefully the next post will contain pictures of my growing chubby boy and his adorable siblings. Happy May day!

Still here

2011-04-08T14:22:00.002-05:00

Just wanted everyone to know we are still here. Matthew has good days and not so good days. He received his first botox injections today. The procedure was quick. The ENT said that it would start kicking in in the next few days. Hopefully we will see this help him. We will hopefully be able to decrease or even eliminate the Robinol medication. We will restart feedings in the next week to see if he will tolerate some feedings in his gut. If he does, we will start weaning him off TPN. I think this will be a slow steady process.

Sorry I haven't had any updates. But there isn't anything to update about. Just normal day in, day out stuff. Rinse, wipe, repeat.

Another good day!

2011-03-18T21:53:00.002-05:00

Bright and early Matthew and I along with our friend, Teresa, headed up to Omaha to meet with the ENT. He asked lots of questions, and answered our questions, and was on board for doing the Botox. He did say that Matthew will need to be in surgery for the procedure, but that the injections actually go in on the outside of the mouth, kind of in the cheek area, but he needs to be able to hold very still, so anesethesia is neccessary. He will have virtually no recovery period from it, only just waking up from anesthesia and 2 needle poke marks on each side of his face (similar to getting shots). This afternoon surgery scheduling called and scheduled for the 8th of April. They will call when it is sooner to give us a time.

Matthew had another fantastic day. He threw up three times; and twice it was because he was throwing a major ATTITUDE and he was not happy about being messed with this morning. He was able to spend some time in his chair playing with his new toys he got from early development, and we went for a walk around the block to get some well needed vitamin D.
I am cherishing each and every good day and hoping the next will be as good.

I was talking today about the fact that I write about how poorly Matthew is doing; how his doctor talks with us (and we had talked prior as a family) that he has been doing so poorly for so long and maybe this is our sign that Matthew is tired, and then he turns around and has GREAT days! While I am not ONE BIT unhappy about our wonderful days, I feel almost like we are crying wolf. He has been so sick on more than one occasion, we get ready for the worst, we prepare our family and Matthew proves that he is still fighting and God shows us "not yet." I don't like drama at all, and don't want any of the people reading thinking we're playing with their emotions. And I know that those of you who know us, know that isn't true; but sometimes I over analyze situations. My friend today told me, "the only thing constant about Matthew, is that he is constantly changing". Boy, isn't that the truth.

I HIGHLY believe in the power of prayer, and believe God has stepped in and intervened, at least for now. He has given us 2 really good days with Matthew, but I know things could swing the other way again in a heart beat; and God will still be in control. I still believe that God hears and answers our prayers, even if his answer would have been "no." Believe me, he surely has told me "no" this week. When you are faced with "making a decision", that is the last thing you as a parent want to do. This week, more than once, I begged God that if this was the end for Matthew, to please take him in his sleep before humans would make me make a decision. I didn't want to be "responsible". We love him too much to choose; but in another way, I knew that we love him ENOUGH that we could make the decision if we had too. That all being said, I don't want to have those thoughts for a long time. And I'm thankful God knows what the future is going to bring, and told me "no" this week. We're going to enjoy as many good days as we get.

Storming the gates

2011-03-17T19:43:00.002-05:00

We're feeling the prayers! Oh my goodness! We are so thankful for all of those we know and those we don't that are praying for Matthew.
Yesterday was a tough day. I debated even sharing anything until we knew for sure that we needed to make a decision. I was so sad yesterday. I needed to process it; and processing is equivilent to writing for me. I hate to get people worried unnessessarily. I don't think we are at an unnessessary point though. It's scary to think you have one more medical option, and "that's it." The idea of having to "choose" what is best for our son is scary. How do we know for sure if we are making the right decision?? What if we're missing something? All those thoughts are swirling through my head. And what on earth will I do without this little guy?? My mind and my thoughts overtook me yesterday. So I wrote. And I'm thankful I did. The outpouring of love we are feeling and the prayers that are storming heavens gates are amazing!!
We talked with his pediatrician late evening and she wanted us to give a dose the medication to help with secrections(Robinol) in the middle of the night. That will mean us getting up every night to give an IV medication, but she wonders if that will help get on top of his secretions. Also, with help from some diastat (that we used to stop the crazy seizures last evening) Matthew slept all night. His nurse was with him today; and I was able to get out of the house. I purposely didn't want to think about what was happening at home. I went and got a hair cut, and a coffee. When I got back around noon, his nurse was happy to report that he had done well for her so far. He had kept his medications down and hadn't gagged at all. They were snuggling and he seemed so much more content. His day continued uneventful. The most UNEVENTFUL day we've had in a LONG time. I took him outside today on a blanket and let him get some fresh air. He's been super content all evening.
Tonight, about 30 minutes before his evening dose of Robinol was due, he started coughing, and sounded really "wet". Within 15 minutes of giving the Robinol, he settled down and was breathing more comfortably. I'm hoping tomorrow that the ENT is completely on board with the Botox. I can't completely guarantee that his good day can be attributed to the extra medication; if fact I would almost guarentee you it was all the prayers that were sent up!
We sure are hoping the good days continue!! We know we have more of a battle, as one day does not make or break it for Matthew, and he is REALLY good at throwing in curve balls, but it's a step in the right direction!! I want a million more days like today! I'll take as many as God gives us!

Back at it again

2011-03-16T15:09:00.003-05:00

Matthew was home for about 12 hours before the vomiting ensued. He has not kept his meds down for three days and is having numerous yucky seizures. He has now had three where he completely quit breathing for 45 seconds to 1 minute. The poor guy is having a rough go.

We took him to our pediatricians office today for a follow-up from the hospital. We discussed everything we have tried, and what we have left to try. Basically there are two surgeries we could do that would keep his medications down, but they wouldn't stop the retching. Both surgeries Steve and I are unwilling to put Matthew through; because they wouldn't solve the problem and his discomfort of retching. They would merely provide us a way "to keep him alive". Our pediatrician agrees whole-heartedly that that is the best decision for Matthew.

We meet with an ENT on Friday to discuss botox for Matthew's salivary glands. It is a fairly simple procedure that would make his salivary glands not produce saliva. We believe that a good portion of Matthew's issue is that he makes A LOT of saliva, and he has a super sensitive gag reflex. He also has difficulties swallowing his secretions, so when they build up, it gags him and then he can't stop. He is on a medication right now to help dry up his secretions, but it's not enough. We are hoping that this procedure will help Matthew. He will most likely have to be sedated as it includes putting a needle in his mouth; but it is our best chance at giving him happy days.

Right now, for the most part, Matthew's days are not comfortable. He throws up and retches alot, is having horrible seizures, and is generally uncomfortable. Our family has two goals or "must have's" for Matthew. Comfort and happiness. Right now we aren't achieving those. In a tearful conversation with our pediatrician, she discussed that if the botox doesn't help; we don't have any other options to make him comfortable and living. None. We will at that time need to make a decision about what is best for Matthew. Being alive and "living" are two different things. Right now Matthew is alive, but not living. He is having more bad days than good. And I don't want to put him through hell just to keep him on this earth. That is not life. And we are not willing to subject him to that just so he can be "alive".

Would you pray with us as we may have to make some incredibly hard decisions over the next few days and weeks? We love Matthew so much; and we want to do what is best for him and what keeps him the most comfortable.

We're home

2011-03-14T23:10:00.002-05:00

Home again, Home again, jiggity jog. We are home. Matthew has his TPN infusing in his port (long term IV) and is doing well. Has been averaging 1-2 pukes a day; which is WAY less than before (40+ times a day). I'm hoping it lasts. Matthew throws lots of curve balls; so I never hold my breath. It feels good to be home!! His home nurse comes tomorrow and I fully intend on getting some cleaning done; but also some relaxing!

Ahhh....it IS good to be home.

March 10th

2011-03-10T21:25:00.002-06:00

Matthew is (once again) back in the hospital It just continued to escalate everyday with the amount of vomiting he was having; and when we took him to see his pediatrician on Wednesday, he had been just shy of 24 hours with out any urine output. She gave us the "go to jail, go directly to jail, do not pass go, do not collect 200 dollars" pass, straight to Childrens'. We were at least given the option of going by ambulance or car, which I chose to drive him as he wasn't vomiting at the time. (I had turned his feeding pump off 4 hours prior to his appointment, because I couldn't handle listening to him retch one more time).

The plan?? Put Matthew on TPN, which is nutrition that he will get in IV form. He has a port, so we will use that to give him his TPN. They are saying his gut will need a 6 month rest. 6 months is a long time. He gets 1 bag a day, and the cost....wait for it....$1000 a day! Thats some expensive gourmet! They tell me this will allow his gut to rest, and hopefully we can start feedings again after that; very, very slowly, of course. I do know that plans could change a million times between now and then, but that is what they say today.

I miss my kids, the normalcy of what people would call a boring day; you know doing laundry, vacuuming, making supper; that kind of stuff. I am praying for normal (or as close to normal) days soon.

If all goes as planned, we may get to go home sometime around Monday. I would really like to go home Sunday, as my kids are on spring break this week.

We're home

2011-03-06T13:45:00.004-06:00

We came home yesterday. Wednesday night and Thursday he ended up throwing up his meds but not his feedings, and so we weren't able to go home. Friday night and Saturday night he did keep his medications down, so they discharged us. Within 12 hours of being home; he started throwing
up. He did have a better morning this morning, but this afternoon he has constantly been vomiting. I'm not sure what has changed since the hospital. I am giving the same medications, the same formula, the same respiratory treatments. Talk about frustration. I need to be home for awhile, but if he doesn't keep his formula down today, I have a feeling we will be headed back to the hospital.

On a happier note, here is a picture I took from this morning, during his "vest therapy". Matthew loves his siblings. He smiled and looked at Mason through the whole book! It was taken with my cell phone, but it was oh so cute!

Still doing good.

2011-03-02T19:18:00.002-06:00

Today has been fairly uneventful. We increased his feedings to full rate yesterday. He is still having some discomfort from his port surgery; but we have been giving him tylenol around the clock to help with that. He got an unexplained rash last night, but a dose of benadryl helped immensely; and the rash hasn't returned.

Today has just been a hang out day. We went for a walk; went to the auditorium to play bingo and got a good nap. He has only thrown up twice; and both times were after medications. The doctors feel that if he has a good night, we can go home bright and early tomorrow. Well, actually we will be stopping by at his neurologists office for a regularly scheduled checkup. And we will need to make an appointment with his pediatrician to get a plan into place that allows for a nurse to come into the home to start IV fluids if and when his retching returns.

We are ready to go home. I am in my my full "hospital funk" mode. For me that entails a very sarcastic attitude,not wanting anyone in my room, and keeping the door closed at all times. When it appears, I know we've been here too long. So hopefully, without much difficulty, we will be heading home tomorrow.

Out of surgery

2011-02-28T23:13:00.002-06:00

After I posted yesterday; Matthew's doctor came through and had spoken again with our surgeon in Omaha. He had felt it best that we come up Sunday afternoon, and get settled so surgery could happen ASAP on Monday.
Surprsingly, Matthhew did not vomit all day Sundaymorning (after a night full of it). This morning surgery came through and said that Matthew's O.R. was scheduled at 2 pm. We had some conversation about the vomiting; and the perplexity of Matthew's case. While he is unable to burp since the last surgery (which is normal), he can vomit. Not major, but it doesn't make sense. His history of vomiting does seem "cyclical" and we talked about that. He also seems to start and stop this cycle without explanation. He does however, seem to be worse when he gets dehydrated. It's a catch 22. The more he vomits, the more dehydated he gets, which makes the vomiting worse, and well, you get the picture.
At 12:30, they came to the room, and said that Matthew's procedure had been moved up and they we were going right away. First, they had to do a MRV (which is an MRI of the veins, essentially) to see how big the clot was that had formed in Matthew's port. Then it was off to surgery to replace it.
They took his port out, and replaced it on the opposite side of his body. The surgeon had a difficult time getting it in, and as a result, the poor little guy has a lot of bruising on his chest. He has been a bit uncomfortable tonight, but has also been flashing smiles too. He is resting comfortably tonight, and they have restarted his feedings. He has not so much as even gagged.
I'm sure we will be talking more tomorrow about what we can do if his GI symptoms stay at bay during this hospitalization, but happen again at home. We can only just take one day at a time, but today, all in all, was a good day.

Yet again, in the hospital

2011-02-27T09:00:00.002-06:00

Yep. Here we sit. In the hospital. AGAIN. Matthew has been struggling with GI issues for the greater part of three weeks. We'd been doing pretty ok at home, and then he got a cold. And a double ear infection. This whole week we struggled to keep enough fluids in his tummy to keep him somewhat hydrated. By Friday it was evident that I was losing the battle. Everything I had put in the last 24 hours came right back out. I hadn't slept more than 2 winks Thursday. We ended up in the ER Friday afternoon. They admitted us. They tried to access his port ( which is a very nice permanent IV access place for him. One poke and you have instantaneous IV access with very little pain.) It wouldn't work. All the fluid they tried to put in went straight in under his skin; which is very painful. They were able to get a peripheral IV in. He actually slept pretty sound Friday night.

I was scheduled to work this weekend; and if I miss my weekends; I get the pleasure of making them up on a weekend i have off; so I try very hard to not miss my weekends. Since Matthew is in the same hospital that I work for, I decided to not call in sick. Weekends are usually slower and I asked to be the 1st to stay home if we weren't busy. I was able yesterday to stay with Matthew until 11 when I was called in and then Steve was able to come up for a few hours with him. The only problem was that we have 2 OTHER sick kids at home. Both Steve and I felt we needed to be in two places at once.

It was decided yesterday what was wrong with his port (via xray) and also decided that we would transfer to Omaha Monday to have it replaced; which means surgery again for Matthew.

The vomiting has not stopped either. Even his medications are not staying down now. We've had two GI docs tell us they are unable to help us. WE don't have the option to give up, though. We have 2 things we want for Matthew; happiness and comfort. We need to get him comfort for the non-stop vomiting, in whatever form we can. So we will be looking into options while we are in the hospital in Omaha.

And for those of you wondering about the surgery he had 6 weeks ago for the vomiting; sadly it isn't working at all anymore. It only worked for about 3 weeks. That is very sad. What looked so promising; didn't last very long.

I am on-call right now for work. I have been scheduled for a 12 hour shift today. So far, they are able to let me stay upstairs with Matthew. I'm thankful; as last night was not restful at all. Matthew without seizure meds, is a non-sleeping Matthew. Non of his seizure medications can be given IV, and thankfully, so far, his seizures aren't crazy right now. We will have to see what comes of this week.

New song

2011-02-16T16:15:00.002-06:00

I heard a great new song on the radio as I was driving to work the other day. It's a good thing I know my way to work easily, cuz it was a little hard to see through my blurry eyes. The song is by Laura Story, and I absolutely love it. It is not being released until April 12, but you can hear it on the radio. I am not a person who buys lots of CD's, but you can bet I will be shopping for this one ON April 12. Here are the Lyrics: The name of the song is "Blessings"

We pray for blessings, We pray for peace
Comfort for family, Protection while we sleep
We pray for healing, For prosperity
We pray for your mighty hand to ease all suffering

And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are mercies Your in disguise?

We pray for wisdom, Your voice to hear
And we cry in anger when we cannot feel you near
And we doubt your goodness, We doubt your love
As if each promise from your Word is not enough

And all the while, You hear each desperate plea
And long that we’d have faith to believe

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are mercies Your in disguise?

When friends betray us
When darkness seems to win, we know
That pain reminds this hearts,
That this is not, this is not our home…..

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are mercies Your in disguise?

What if my greatest disappointments,
What if the aching of this life,
Is the revealing of a greater thirst this world can’t satisfy.
What if trials of this life,
The rain, the storms, the hardest nights
Are your mercies in disguise?

Updates

2011-02-09T16:48:00.004-06:00

Matthew has kept us on our toes the past few weeks. For the first week home, we worked very hard to tweak Matthew's meds, as he started retching again after we got home. Not having reflux has helped dramatically, but Matthew is very accustomed to retching, and it's a learned behavior for him. So if he gets air in his belly, it makes him retch, and the same with if he has too much saliva in his mouth. We are slowly but surely getting things better for him. Even with the retching he is doing now, he is still way better than before. The surgeon also said that this is a six to seven week recovery. We are only 3 1/2 weeks in, and in that respect, he is doing phenomenal.

We have had a lot of appointments the last couple weeks, trying to catch up with all the appointments we missed due to being in the hospital. The rest of this month will be busy with Dr. appointments, too.

Last week, we saw the eye doctor and the dentist. The eye doctor says his eyes are a bit better and was able to tell that Matthew was tracking on the left side. He says that CVI (the type of visual impairment Matthew has) is difficult to tell how much vision Matthew has. Matthew's eyes are normal; but the way his brain interprets the information is why he is visually impaired. Since he is unable to tell us what he see, we are only guessing what his vision is. The eye doctor told us we don't have to come back for 2 years. 2 YEARS!! One less appointment we have to keep.(leaving his eye appointment, wearing disposable glasses because his eyes were dilated)

His dental appointment was pretty uneventful. He didn't appreciate having anything or anyone in his mouth, but she was quick. We will revisit in 6 months; just like normal.

Today we saw the urologist. He reviewed his kidney ultrasound, and said everything looked wonderful. He said...wait for it.... that we DO NOT HAVE TO COME BACK!! He said that he will send a letter to Matthew's pediatrician to tell her to make sure and do a kidney US with him every year, and if problems arise, he would be glad to see him again. That was wonderful news to us! Matthew has enough doctor appointments and I would love to get rid of a few. We love this urologist too. The first urologist we went to see wanted to put Matthew on all kinds of medication, and run all kinds of tests. The medication he put Matthew on made him unable to empty his bladder (this was when he was a tiny baby...6 months or so) and he wanted me just to cath him the rest of his life. When we took him off the medication, he was fine. The medication was to help lower the pressures in his bladder. Our new urologist, however, said that ALL babies have high pressure bladders, that is why they "go" so frequently. Over time, they learn to control their bladders. And he was right, Matthew has been just fine, and did not need all of that intervention. His only urinary problems have been related to his tethered cord.

I remember when a lot of our hydro friends were so excited about appointments getting fewer and farther between, and was bummed because it wasn't that way for us. I think we are maybe starting to see our reprieve. And boy, does it ever feel good! We want Matthew to live as close to a "normal" life as he can; one that is not spent in hospitals and doctors' offices.

We got an early gift..we are going home today!...like right now!

2011-01-18T12:41:00.001-06:00

This is the best way I can describe about how I feel today

2011-01-17T18:11:00.002-06:00

Matthew has had an amazing day! He is on his full feedings, he is off his IV pain medication, and off of 1 antibiotic. The other antibiotic he can go home on, since there is an oral version of it. He is not on oxygen, and the pain medications we can give in his g-button seem to be helping him; except for when he coughs; then he is uncomfortable. Matthew is not doing any retching or vomiting. He is happy as a clam (except when he coughs).

I have a completely new little boy!

Things are looking up

2011-01-17T13:30:00.002-06:00

Well they said Saturday was going to be the worst day, and I agree with them! Saturday was rough. Lots of crying, and coughing for our little guy. Saturday evening, Steve and the kids came up with me to the hospital, and then I took the kids home with me and Steve stayed Saturday night. I worked Sunday, and my dad came and spent the day with the kids; who, as expected, got spoiled. I heard all about sledding, hot chocolate, and late night ice cream!

Last night I came up and he was sleeping. They have started weaning his morphine; so he is a bit more uncomfortable with coughing, but he is also more alert, and able to cough harder. We have started his feedings again, at 1/2 rate; and so far.........NO RETCHING!! I cannot believe it. I almost don't want to type it to jinx him. So far, the transformation is amazing. He is getting g-tube feeds as the j-tube went "bye-bye" with the surgery.

I believe, so far, we are on track for a Wednesday dismissal. We are ready to go home and stay home!

Evening update

2011-01-14T22:17:00.003-06:00

I've gotten Matthew tucked in for the night. He is resting, finally. This afternoon he has been very uncomfortable. We have turned up his morphine twice. Every time he coughs though, he cries out in pain. And then he won't cough hard enough to get what he is coughing out. And so then he gags. It's a vicious cycle. Our night nurse (LOVE HER) says tonight and tomorrow will be the worst. She keeps telling me it will be worth the pain he is going through right now. I hope so. This momma heart is hurting tonight.

Say prayers for our sweet little buddy. We're ready for our Matthew to be back to his old non-vomiting, smiling self.

Surgery today

2011-01-14T08:15:00.002-06:00

We saw the surgeon late last Wednesday night and he was in agreement with the surgery to stop the reflux. So much so, that he put him on the surgery calendar for THIS MORNING. None of us could believe it! So we will be going back to surgery in about 40 minutes. We are praying this is the fix for Matthew's vomiting. He still has pneumonia, is running fevers and has a high white count despite being on two very strong antibiotics, so we are nervous about how anesthesia will affect him.

I will try to update later this afternoon/evening when we know how surgery has gone.

1/12/11

2011-01-12T18:10:00.003-06:00

I just haven't been in the mood to update the blog. Sorry. It get frustrating and annoying to update "Matthew's still sick" or "Matthews in the hospital". I thought about not even putting anything here; but I've had numerous people who aren't on facebook wonder how we are doing.

Well, Matthew is in the hospital. He's had pneumonia since 12/29. Despite 3 different oral antibiotics at home, he could not kick it. While we doing fine at home, we need to get him well enough so that the doctors can perform a surgery to hopefully stop the vomiting. So our pulmonologist figured it would be best to admit for "a course of IV antibiotics." He said this could be up to 2 weeks. We are then hoping to encourage the surgeon then that this is "as well as he's going to get" and to do the surgery. Without the surgery, he continues to throw up, and aspirate and get pneumonia. This will be a delicate balance in timing.

There will not be dramatic changes here from day to day. We are basically here; watching and waiting. So probably nothing really earth shattering to even blog about. I'm sure I will update when the surgery day is set.

Merry Christmas!!

2010-12-25T07:00:00.001-06:00

This year my parents gave us the most unique letter with our Christmas present. They wrote this entirely themselves. I loved it so much, I wanted to share it will all of you.

Twas A Few Weeks Before Christmas

'twas a few weeks before Christmas and Mom said to Dad, "What should we get those dear kids that we had.

Who once were small, but now, sakes alive, the oldest is 32 and the youngest 25.

And that's not all, lest someone be missed; there are spouses and grandkids to add to our list.

We love them so dearly, they're just as good as can be, how do we find the perfect gift to put under their tree?

Oh what shall we get? What thing would they like? It sure was easier when it was a ball,doll, or trike.

For Steve, when he's nestled all snug in his bed; there's visions of 4-wheelers that dance in his head.

And what about Jill, what would be a good fit, " Well", said Mom, "I know she loves to crochet, sew and knit."

Then there's James; he always likes the latest gadgets, but how can we know that he doesn't already have it.

"You know", said Dad, "Kim enjoys reading so well, how about one of those new fangled E-books they sell?"

Oh, what could we get that would be good for Curt? If it is was something to do with fishing we know it would work.

But how do we figure out what that "something" would be? It seems he already has everything from A to Z.

A sweater for Jill, some new tool for Steve? We really must hurry; it soon will be Christmas Eve.

"AH!" Dad said,"I got it, I know what it will be, let's give them some green stuff to put under their tree."

And what to do with it, we aren't going to say. They can keep it or spend it or give it away.

This will be great, this will be sweet. Mom especially thinks that this will be neat.

She won't have to shop, she won't have to run. In fact her shopping is nearly already done.

(Well, maybe not yet, she's not quite thru) there's Micah, Megan, Mason and Matthew.

You might think this is selfish and that might be true, but it doesn't mean that we any less love you.

It's just so hard, I hope you can see, to try to figure out what it is that you all really need.

for this reason we send you this gift of green, we're both really excited to see what will be seen

of the gift that you get or the thing that you do, so with all of our love we send this gift to you.

The stockings were hung by the chimney with care...

2010-12-24T14:21:00.005-06:00

While we were in the hospital for the greater portion of 6 weeks; I remembered some of the Christmas projects that I wanted to get done. 6 weeks= 4 new stockings. Hopefully sometime between this year and next, Steve and I will also get new stockings :) I would prefer to make these from home however; and not the hospital room.

Merry Christmas!!

We are home

2010-12-22T19:58:00.002-06:00

We got home yesterday afternoon; and I am busily preparing for Christmas. Hope to get a couple pictures of Christmas decorations (including the 4 stockings I knitted while I was in the hospital with Matthew) before Christmas.

Matthew is doing better; still spiking some fevers; but they are lower and shorter in duration. He is sleeping a LOT; but I'm hoping that it is because his body is trying to recuperate.

Oh, and mysteriously {but I'm not complaining} his vomiting has essentially vanished. Praise the Lord for that!

Never in my life:

2010-12-19T10:21:00.002-06:00

Have I been so happy to find out that Matthew has a bladder infection!!

Matthew's doctor came in singing Christmas carols this morning and looked at me and said, "he has a bladder infection". We both looked at each other and said "YES!!!"in an excited tone.

I know it sounds weird; but a bladder infection is good on many levels.
#1 We don't have to go to Minnesota. When Matthew gets a high fever; he typically has weird, uncontrollable seizures. This is what happened when we went to Minnesota last year. The cause of his crazy seizures ended up being a bad pneumonia that wasn't properly diagnosed.

#2. It's easy to fix. Some antibiotics and home we go, soon...as soon as tomorrow, maybe.

And he is having the typical fever pattern for a bladder infection. The doctor calls it a picket fence pattern. He spikes quickly at night and stays up there for a while (and it is a stubborn little fever; it takes both Motrin, Tylenol AND cool washcloths to his whole body to get it to break) and then is fine for awhile.

He did spike a fever again last night, and had 1 yucky little "I'm gonna stop breathing and turn blue" seizure. Luckily he was on oxygen already, and his oxygen didn't go terribly low. His fever broke early this morning and he is resting comfortably.

Did I tell you how happy I am that it's a UTI??

Thank you, Jesus!

It's not his shunt

2010-12-19T00:58:00.002-06:00

Back to square one

I can't even think of a title for this post.

2010-12-18T19:09:00.003-06:00

So; Friday, Matthew got a fever. He was working a little bit harder to breathe; so I though for sure he was getting pneumonia. I made a Dr. appointment for the afternoon; and by the time we went to the doctor, he didn't have a fever anymore, but just seemed tired. He's been especially tired for the last few days; but I took it as he was trying to get recuperate from his last hospital stay. The doctor wanted to run some lab work just to make sure he didn't have any bacterial infection brewing and then we went home.

Around 5:30, our pediatrician called and said that his potassium level was dangerously low. She had already called the doctors at Children's in Omaha and they all agreed we should be admitted. I was not happy. I was SOO bummed. We've been doing so good at home. Reluctantly, and dragging my feet, I packed a bag and drove to omaha.

When we arrived, the doctor came to visit us and said that this would hopefully be a short stay. They wouldn't even start an IV. They would just get lab work, and then give him some potassium in his g-button, check his labwork again in the morning; and as long as his potassium was trending upward, we could go home.

Around 2 am; Matthew started spiking a fever.
We could not get it down with tylenol or motrin.
They drew more lab work (which coincidentally showed his potassium to be getting better).

When the doctor rounded this morning, she thought he looked a little stiff, not himself and his color was "off". They checked his oxygen sats' and they were in the 50's. She thought maybe he was having a seizure. His sats returned to normal quickly, and she gave some orders, and left the room.

The nurse was in the room, and I picked him up so they could change his bedding (he had thrown up while the doctor was in the room...oh, and it was bloody..grr) and when I layed him down, he had that same look on his face, and he wasn't breathing.
They plugged his sat monitor in and once again, his sat's were in the 50's. The nurse yelled out help and they got out the ambu bag. The did bag him for about 30 seconds, until he started breathing again. The doctor thinks maybe he is having atypical seizures. If these are seizures, he's been doing it for probably a week. He basically just gets a bit stiffer and his eyes glaze over and roll back a bit.

Our little "overnight stay", is turning into something that isn't so easy.

They loaded him with ativan and phosphentoin (2 seizures meds) and told us that if he is still doing this tomorrow, they are going to arrange transfer to Minnesota to his epilepsy doctors.

I am weary of this. I can only imagine Matthew is too.
Our family needs to be together. UNDER ONE ROOF. IN OUR HOME.

His fever is gone. He is resting fairly well this evening. But he is also on a lot of seizure medications.
In talking on the phone with a friend, I started thinking about his shunt. No one has investigated his shunt. He is sleepier than normal, having spells of not breathing, and having weird events. We need to check his shunt. I asked his nurse and she called the doctor.

As I was typing this, they came in and we went down for a CT scan and a shunt series. We need to cross it off the list.

Is it sad that I am hoping this is a shunt failure??? It would be so much easier than the alternative.

News story

2010-12-17T07:00:00.000-06:00

Here is the story of us that was on our local news: Steve DID not want the microphone. So that left me to talk. While I'm not a huge fan of the camera; it worked out ok.

Slowly but surely

2010-12-15T16:58:00.002-06:00

Matthew is getting slowly better. We are seeing more smiles and less gagging. It's been easy to neglect the blog especially trying to get back in the swing of things and with Christmas quickly approaching. But, I've also neglected the blog because some days are just too painful to relive by blogging about it. It's been a hard tear-filled recovery . Matthew is starting to sleep more at night, and we are not needing a nurse to come as often. Having a couple nights rest over the weekend when a nurse came into the home was a god-send though. Our day nurse, Jane, has also come in a lot, and even came at 3am one morning so I could sleep.

I have some fun Christmas stuff to post, too. I have been enjoying doing some decorating in our new home.

Oh, and for our local peeps: We recenty found our that our family was nominated and was chosen as a Magic moments winner. We will be on TV tomorrow on Channel 8! I believe different parts of our story will air at 5pm 6pm and 10pm. We're oh so excited!! If they post our story on a online video; I certainly will link it for everyone.

We're home

2010-12-05T21:31:00.003-06:00

Matthew, Steve, and I arrived home last night around 8:30. We're tired; Matthew is still having a lot of issues with mucous; and something happened with our nursing hours and we aren't able to get nursing care till later this week. I was really hoping to get some help with Matthew at night time; since he does not sleep well after about 3 am. We're hoping he'll continue to improve again; but I think the trip home made him back step a bit.

mixed emotions

2010-12-01T22:17:00.002-06:00

Well they are finally talking discharge. Matthew has had a couple decent days; but yesterday was rough again. Today seemed better; but he is still vomiting and I feel like they keep throwing meds at him. I'm not sure how I feel about making my son into a chemistry experiment. He won't be fully recovered from the adenoid surgery for another week, and his stomach is still very delicate and gets very upset very easily. He is off oxygen and not needing deep suctioning anymore, so we are seeing some improvement. I don't feel like we've got everything figured out, but its not for lack of trying. Depending on tomorrow and what the doctors do, we coyld be going home as soon as Friday. I'm eeady to be home and be with my other kids, too. I just wish Matthew was a bit better. I'm still so glad we came. The doctors have really put their all into figuring this out. We've gotten excellent care here..I couldn't have asked for better; and we are thankful for that. Hopefully our next update will be from home.

Things Are Looking Hopeful

2010-11-28T19:46:00.001-06:00

Hi, it's Kristen, bringing you an update from Jill:

So...sorry for the lack of posting. The family was here for the weekend; and I barely cracked open the computer. We had a great time; but I was sad (and so were the kids) that we did not get to go home with them.

And...on another note; some of Matthew's friends must have been keeping up with the blog; and have also decided they would like to try out this hospital thing. Both of our friends Cayman and Owen are in the hospital. We're praying for both of you guys! And Matthew wanted you two to know that sitting in the hospital is not as fun as it sounds!! So hurry up kids and get better!!

After I posted on Wednesday; Matthew started waking up from surgery; and things weren't pretty for awhile. He had lots of swelling in his throat from surgery and had a hard time breathing for awhile. That night was pretty rough for him. Steve and the kids got in late; and daddy sure was sad to see his little guy struggling so hard. I think that always makes surgery so hard; to see them struggle to recover.

Thursday Matthew was still on oxygen from surgery; but breathing better. The pediatrician told us that we will not know for sure if the adenoids surgery was helpful until we are about 2 weeks post-op.
As a family, we were able to go out to eat at the same restaurant we've eaten the last two years we've been here; and had a traditional Thanksgiving meal. It was nice to get a bit of a break. We had an awesome nurse that day who only had Matthew to take care of, so she just sat in his room the whole time we were gone; and we didn't have to worry about being away from the hospital.

Friday we did our best to keep the kids busy. They played hospital Bingo in the morning and made a craft in the afternoon. Steve stayed with Matthew; and I had fun keeping the kids entertained. Matthew got off oxygen, but was still coughing and vomiting quite a bit.

Saturday my uncle who lives in here in MN and I took the kids to an indoor waterpark. That was tons of fun for them; and passed the day quickly. If you are ever in the Minneapolis/St. Paul area; I HIGHLY recommend the Waterpark of America (it next to the Mall of America) and it was the hugest thing I had ever seen!

Today the family took off for home :( and Matthew an I have settled back in our routine. Matthew is still having a hard time managing secretions; and frequently gags with them; but we at least know why he is retching with them. The pulmonologist says he has a very strong cough; but also a very VERY delicate gag reflex. So anytime he coughs any mucous; he ends of gagging and well..you know the rest; I'll spare you the details.

Since not much can be done about a sensitive gag; the pediatrician and the pulmonologist are going to focus on trying to minimize his secretions by drying them up as much as possible. Matthew has also gained 5 pounds since admission. He is not retaining any fluid; so we are again wondering about calories. His jammies from home do not fit anymore and we have had to go up a size in diapers. I'm sure he is getting a few too many calories; and a dietitian will be joining us tomorrow to figure out an appropriate amount of calories for him. I've joked that this year Thanksgiving has been harder on Matthew's waist line than mine! He has a full fledged double chin and his legs have some chunk to them. The upper supports on his wheelchair are getting snug, too.

The pediatrician says that if all goes well; we may be able to go home over the next weekend; but Matthew always has his own ideas, and she reserves the right to change her mind.

It feels like we entered the hospital so long ago, with the vomiting blood issue; and have gone so many different directions with different problems; but now I am feeling hopeful about going home with a plan in place. They are not eager to send us home until he is well. Matthew sure is an difficult kid to figure out; and changes his mind about what his current problem is going to be. But he's a fighter, too! And God sure isn't finished showing us miracle through this little boy yet! We are so thankful!

out of surgery

2010-11-24T14:27:00.002-06:00

Matthew came through his procedures with flying colors! He is resting well and they expect to start feedings with him this evening. I will update more throughout the weekend. Steve and the kids are on their way up for our annual thanksgiving. Thank you everyone for your prayers!

Long Overdue Update

2010-11-23T19:23:00.002-06:00

Hi All...This is Michelle posting the latest from Jill:

So I left you last with saying Saturday would be quiet and it was. Saturday night we decided we would start pedialyte at 5 cc's an hour. Sunday morning, he was doing some vomiting, so the doctor wanted to try a new medication, called Reglan. It is supposed to help with GI motility, but also comes with some pretty big warnings on it's label; especially for children who have seizures.

By Sunday afternoon, he was still vomiting, and now starting to have issues with his heart rate. His heart rate would inexplicably drop to about 60 beats (his normal is 100-120) and then slowly come back up to where it needed to be. Around 1 am, he woke up having a huge seizure. Matthew typically does not seize in his sleep, which was odd. Then the retching started. HORRIBLE, horrible amounts of retching. And as soon as he fell asleep, he would have a seizure, and the cycle would begin ALL over again. About 6:30 a.m., I was awakened to someone semi-frantically saying his name. I woke up and opened my eyes and Matthew's whole face was blue. His monitor was beeping, and the saturation was 40%. I thought in the back of my head "here we go, he's gonna code". I could tell he was in the middle of a seizure. I yanked the pillow out from under his head, dropped the head of the bed flat and ripped open his pajama top so I could see his chest. He still wasn't breathing, and the nurse was yelling for help.
My immediate response was to do a sternal rub (taking your knuckles and rubbing them over the sternum; a painful stimuli to make someone respond...in Matthew's case to make him breathe), and he gasped a big breath. The nurses called a rapid response; which is a call that brings PICU charge nurse, PICU doctor, respiratory, and a couple other people I believe. As he came out of the seizure, he started breathing again, and they decided to load Matthew with valium, give his morning seizure meds early, and draw some blood. We almost bought ourselves a trip to the PICU, but the doc's thought we'd try to stay put on the floor. I also said that I didn't want any more Reglan given, as I believed it was causing our seizure and low heart rate problems.

Matthew (and me too) slept the morning away. Because of all the retching, they decided we had given the G-tube only enough trial and said that we must put the GJ back in if we wanted a reliable way to give his seizure meds. I reluctantly agreed.

We also had a new pediatrician rounding, and she sat down with me and went through every possible reason a person would have retching, and what tests could be done to determine if this was the problem for Matthew. I was immediately impressed. We drew more lab work, scheduled x-rays, and consulted neurosurgery and ophthalmology (to make triple sure it wasn't his shunt).

He went downstairs in the afternoon for the x-rays and the gJ tube placement. During an x-ray, he had another one of the "stop breathing" seizures, and scared the crap out of both the nurse and the x-ray tech's. After he came around, we took him to interventional radiology to place the GJ tube. We met with the anesthesiologist, who, in an unprofessional moment, told me he didn't know what procedure we were doing. When he asked his colleagues what procedure was to be done, none of them knew either. I immediately told them they were making me very nervous if they were going to be caring for my child and they had no idea what they were doing. I actually couldn't believe what they were saying! They went and got the radiologist, the chart and got themselves set straight. ( Later that day, the radiology manager visited me, and said the radiology nurse had been told about the incident. He brought me flowers and apologized. (: )

He was brought back to the room about 1 1/2 hours later tired, but doing well. The pediatrician came and talked with me again, and wanted to do a CT scan, and a shunt series to make sure all these things were not related to a shunt malfunction. As the evening wore on, and the Reglan got out of his system, he seizures lessened, and the heart rate dropping episodes went away. He actually slept the most peacefully last night than he has in a long time.

This morning, most of the lab results were back, and everything looks normal. His CT scan, and shunt series were fine. On the CT scan, however, it showed a lot of fluid collection in his left Mastoid (which is part of the ear). The doctor said that fluid buildup there can cause dizziness and vomiting. His sinus x-rays did show an enlarged adenoid. So tomorrow at 11:45 Matthew will be finally having his scope, bronchoscopy, a ear tube place in his left ear, and a probably adenoidectomy.

We also restarted feedings in his J-tube. It is just pedialyte, and it's going only at 10 cc's/hour; but he is tolerating it. No retching, no vomiting. He still is getting respiratory treatments 4 times a day, along with chest percussion (which helps loosen secretions). We've come a long way and gotten a lot done in less than two weeks. I'm very happy to say that the doctors here have looked for every possible problem, and aren't going to send us home until they've searched every avenue. I wanted to be home by Thanksgiving, but I don't think that's possible. It's probably going to be the weekend at the soonest.

Saturday Update

2010-11-20T18:13:00.002-06:00

It's Kristen posting again. I have an update from Jill about Matthew:

Saturday update:

No update yesterday; but no new was GOOD news! Matthew had a wonderful day yesterday for the most part. He was up and going early in the morning, and all the doctors made their rounds early. The goals for him were to get off of oxygen and by 4pm we had accomplished that goal. He did so well! He was batting the oxygen out of his nose by noon that day; and it was all the respiratory therapists could do to keep it in his nose. By 4 o'clock; i asked to just keep it out to see what he would do. He hasn't had oxygen since. Thursday we had taken the G-tube out and the doctors were worried he wouldn't keep his medications down without putting them in his J-tube; but he has kept them down beautifully. He had the perfect day yesterday. He fell asleep around 9 pm and woke up around midnight. He was screaming in pain and then he gagged. I vented his tummy and a bunch of green bile was in his stomach. He vomited 3 more times throughout the night; which was disheartening; but I asked for some zofran for him and then he slept peacefully. So my question today to GI will be what he thinks about our evening. We we vent Matthew; we never see greenish/yellow bile. And we saw that for 1/2 the night and now we are just getting clear stuff again. This kid sure is a puzzle.
We will be asking GI today also what is the plan for the weekend/ beginning of the week. When will we start feeding him? Will we do a scope still? What will be our goals for discharge. Yep; you read that right; discharge. They are pushing for a thanksgiving goal. We have spent the last two thanksgivings here; and will spend another one here if we need to; but we are going to try to avoid it.

We are also getting visitors today. Matthew's grandma and grandpa (my parents) are coming to stay with me for the weekend! What a lucky girl I am!! I am so happy!

Quick update

2010-11-18T23:21:00.001-06:00

I know some of you are waiting for an update and I'll try to give you a brief one and then send a big update tomorrow to Kristen to post. Matthew has had a good day overall. He is still on high flow oxygen, but it is set to room air. Nasically they are just using it to push more air in Matthews lungs. Matthew has been running fevers all day today but his lab work is good. His chest Xray is good so basically they think this is more of a virus vs. Aspiration; although I am questioning this.
We took out Matthew's GJ tube today and replaced it with a G tube to see if this helps his retching. And sadly today we have seen some vomiting, but not any retching{ which is kind of good}
Today friends of ours that we met here at the hospital here last year ( and are strangely hospitalized again at the same time as us) got some very sad news today about their sweet little girl. They are now having to deal with the emotions of taking their sweet girl home to keep her as comfortable as possible ; as medically there is nothing that can repair her brain.
Also,this evening I heard a nurse cry out from across the hallway "I need some help in here!" Followed by nurses running from every direction and the sound of a code being called overhead. My knees trembled and my heart broke for that childs family. I'm not sure of the outcome, but prayers were sent heavenward from our room.
There is sadness all around, but I also feel God's presence. I am tucking in for the night; and just wanted to give you all an update. If you have kids..go give them an extra squeeze today..life is short.

Jill's update, a little delayed

2010-11-17T21:23:00.002-06:00

It is true, Jill's update has been sitting in my [Kristen's] email inbox since late yesterday night. This is the first I have been able to log into my email and get it posted. Sorry for the delay.

Here it is (words from Jill):

Tuesday started off well for Matthew. We knew it was going to be a restful day for him. And the morning was pretty uneventful. Labwork was all normal; the ultrasounds were normal, the upper GI just showed delayed movement through his bowels, and also that he could not tolerate that amount of food in his tummy at once. The epileptologist reviewed his EEG (they did an overnight one on Sunday) and said that it looked just like the one that had been done in April. Confirmed that some of the movements we saw were not seizures and said for him it looked the same.
The ENT doctor came in and met Matthew. She talked about what her role would be in the procedure tomorrow; and that she thinks his addenoids are part of the problem. She said she would look at them; and if she felt like they were she would remove them.

Then about 1 pm, Matthew started having problems keeping his oxygen saturations up. He started sounding more junky in his lungs. The nurses put him on ozygen. That helped for awhile, but he was breathing SO hard. They did not feel comfortable keeping him on the floor. The epilespy wing is removed from the rest of the hospital; and so anytime respiratory therapy needs to come across from the hospital to a separate building. They felt that due to his increased respiratory distress; it would be best for him to be on a regular medical floor. They did another chest x-ray; which didn't show any worsening, blood gases, which were good; and then moved us over. While I am sad we are not where we know all of the nurses and are comfortable, the upside is that I can have my computer in the room, and my cell phone too. I do feel like I can communicate with the outside world again.

They have ramped Matthew's treatments up to every four hours; and started another nebulizer treatment. They started steriods to give in his g button, and now he is on high flow oxygen. As I sit here writing this; Matthew is working pretty hard to breathe; but is keeping his oxygen levels up.
I am doubting we will doing the procedure as planned tomorrow due to the fact he will need to be seddated for this, and this is not the best plan when you lungs are already compromised. We will see what GI and ENT say in the morning.

On a weird but crazy side note; Matthew's retching has essentially went away. He will still vomit occasionally on secretions, but no vomiting is happening. Praise the LORD! We have exchanged one probem for another :(

Despite everything he is doing right now; Matthew is still giving smiles. When I think about how hard he is working; I knowI would NOT be smiling; I be downright sad and whiny. He is truly a fighter; and we hope that he can continue to be strong and fight yet another thing off. We want to bring him home so badly!

11/17

2010-11-17T13:30:00.002-06:00

I have an update from last night sitting in kristen's inbox that I'm sure she will post later, but I wanted to send you a quick update from my phone to tell you we are ok. Matthew got very sick last night..he had been moved off of the epilepsy floor, and we were on the medical floor. Shortly after 1 am he got VERY sick. I was sure he was heading very quickly to the PICU with a ventilater. Miraculously, he was able to clear the secretions with a large vomit. But his cough was very weak and he couldn't hold his eyes open any more. He finally got some sleep this early morning and wasscheduled to have a bronchoscopy and scope with a possible addenoidectomy. He was still working so hard to breathe and is on high flow oxygen so I was concerned about doing the procedure. They send up an anesthesiologist to check him out and without listening tohim, he said it was ok to do the procedure. When we got down to the OR however the anesthesiologist said he was not willing to do the procedure and both surgeons agreed. I was surpisingly relieved. They worried that they wouldn't be able to get him off the venilater. So we are back in the room, and we are relaxing for the day. They are giving him steriods and extra nebulizer treatments to see if that will help.we will try to reschedule the procedure as soon as he is well enough. Thank you for your continued prayers..again I apologize for any spelling errors as this is being typed on my phone.

Jill's Update from Today

2010-11-15T20:22:00.002-06:00

This is Jill's friend Kristen bringing you words from Jill on Matthew's update for today. She cannot post herself from the particular hospital where they are at. We did this once before, I think exactly a year ago it was. This is not the beginning of a new yearly tradition for us (I promise). I know, because I am covering that in prayer!!!

So here is Matthew's update (written by Jill, just simply posted by me):

Matthew had a very nice restful day yesterday. The doctors say he is not "out of the woods", but they feel he is stable. We have not seen bloody vomit since Saturday night. So hopefully his gut is healing some. They are working on plans to get GI and ENT together to do a scope. That way we can look at all the anatomy and can see if something is causing Matthew to vomit. We also can know how bad the bleed in Matthew's gut is. Steve also decided it was best to take off for home yesterday. His business still needs to run; and the other kids need as stable as environment as possible.

Today was a whirlwind. We had lab work, and ultrasound, and an upper GI/small bowel test done today. We started with all of Matthew's breathing treatments this morning at 7:30 and ran, ran, ran until just before 2 pm today. We do not know the results of these tests; but will by tomrrow.

One of the tests was to check GI function; and he ended up throwing up ALOT of barium today. This was really hard on him and tonight he is working pretty hard with secretions. I think it really iritated his esophagus. Hopefully this test will give them some answers; because is sure was hard on his little body.

Thank you to everyone who is praying for Matthew! I do apologize for taking so long to update. I cannot access the blog from the hospital; and it is hard to type up all this information on my phone. Thank you Kristen for you help!!

In St. Paul

2010-11-13T21:48:00.002-06:00

I apologize for not updating sooner. For those of you who follow Kristen's blog, you know that Matthew has been very sick for a while now. We were readmitted to the hospital on Monday, and then dismissed on Thursday. While he was admitted, they started him on TPN, an IV nutriton. We were hoping starting this would help the vomiting. It didn't seem to get any better. He continued to vomit, but the staff was sure it was most likely due to secretions. So they sent us home on Thursday. Friday, a home health nurse came out and didn't think Matthew was well enough to be at home. She called our pediatrician, who wanted to see us in the office. When we went to the office, our pediarician felt that we had exhaused our tries in Omaha. Our GI on Omaha has said that there is really nothing else he can do for us. So in talking with our pediatrician, he said we had two choices. Choice 1 was to try to make him as comfortable as possible, and eventually he would vomit enough that his esphagus would tear and he would bleed ubtil he passed. Option 2 was to get a second opinion from another GI doctor. We have a working relationship with Minnesota,and option 1 was not an option for us. So our Dr called MN and told us to pack a bag and get tot the hospital. There was only one problem, there was a huge snowstorm coming through. The sitiuation felt desperate enough that we decided to make the trip. My parents offered to take the kids and so Steve and I and all the kids packed up and got on the road. It was a long trip..a trip that normally takes 6-7 hours took us 9. We arrived in St. Paul around 3 am. Our pediatrician called the ER doctor to tell us we were coming and so they were expecting us. The trip was not easy for Matthew; hevomited most of the trip. We were quickly settled and lab work drawn. His hemoglobin was better than we thought and hwe didi not require a blood transfusion.
GI and neurosurgery has come to see us today. They believe that he is a tough case, but that they have some ideas and some more things they can do for him. We are doing ultrasounds, xrays and will be doing blood tests. They are also going to tryh to do his scope and involve an ENT doctor with this procedure to see if they can figure out what is wrong. Today was a better day than yesterday, though we haven't really changed anything. My blog is blocked from signing into on the hospitals internet network, so I was able to type this up on my phone. Please excuse any typos. I will do my best to get you updates as I have founf out just how many people care so deeply for us. Yesterday was very tough for us, but today we feel refreshed and in a safe place. We appreciate your prayers. We know God is in control. The franticness of yesterday has been replaced with peace today.
We are hoping for aquiet day tomorrow and hopefully less vomiting ( today has been still a lot of vomiting bit bot as much blood loss). As long as they can keep him stable, Monday will be a big day of tests.
Thank you for praying!..we love you all very much!

Update on yesterday

2010-11-09T11:03:00.001-06:00

For those of you who aren't on my facebook, I wanted to update you on Matthews procedure from yesterday. When we arrived at the hospital and were admitted to the pre-op unit, the anesthesiologist who saw Matthew decided he was too sick to do the procedure. When GI came in to talk to us, they decided it would be best to admit him. So we are back in the hospital and Matthew is on "gut rest" for at least 1 week. He is on TPN, which is IV nutrition until we can put food in his stomach again. We will most likely go home on TPN at least for a couple weeks. We are hoping that this will help his vomiting. Being that I thought we were just coming for a simple procedcure, I did not pack anything beforhand(not smart on my part), so I did make a quick sttop to Walmart last night for the essentials, but sadly my computer is at home. I will most likely make a run home today or tomorrow. I will also be only posting brief updates ( if that is possible for me) as I am posting this update via my cell phone.
Matthew is restung well today. He did a lot of vomiting yesterday but today has done better. We're hoping for a restful day today.

Procedure

2010-11-07T22:28:00.001-06:00

Matthew is having a scope done tomorrow morning; to see if we can find the answer to all of his retching/vomiting blood issues. I doubt they are going to find anything; but we cross this off the list so we can move forward. Matthew will have to have anesthesia; which is always a bit hard on him. Prayers are appreciated!

Crafty Girl: Part 5

2010-11-06T19:05:00.001-05:00

Okay, getting off the updates on Matthew track for just a bit, I've been wanting to post this picture for a long time. I have had this quilt finished for a couple months now; but the person whose baby it was for I was pretty sure read my blog; at least from time to time. I didn't want to spoil the surprise. I was able to give it to her this week, so here it is for all to view. It turned out so great, I think. The triangles are red and brown minky (the soft fabric with little raised bubbles) and the square shapes are a cute farm print with cows horses and pigs on it. I backed it with the red minky and then free hand machine quilted on each farm fabric square. The binding is black and white striped fabric that matches the cows legs. If you click on the picture you can make it bigger.

Now I can't wait to meet the baby boy that is the recipient of this blanket!

{sorry the picture is a bit blurry; this picture is from my cell phone as I forgot to take a picture of it with my good camera before gifting it!}

Quick update

2010-11-05T12:29:00.003-05:00

I'm sorry I haven't updated since we got home; but right now I am some what overwhelmed with all of Matthew's care and everything he needs right now. Here is a quick update.

Matthew, when he is not retching, is a pretty happy little boy
That being said, Matthew spends a good majority of his time that he is awake retching. :(
Twice since we've been home, he has retched so hard he is throwing up blood for hours. That is no fun.
I called his GI today and they want me to bring him to Omaha to the ER. I politely declined.
Instead, I called and made an appointment with Matthew's primary doctor today at three. I am quite certain they will want to admit him. I will not tell you how I feel about that; or what I will tell them if they say that. I will be asking for an alternate solution. I'm pretty cheeky right now.
Matthew's care has given me double fold the work. Between meds, percussion treatments, cough assist breathing treatments, hours of retching, and washing all the clothing and towels that goes along with catching that amount of mucous has taken up both of my days home so far.
We are thankful that we have a nurse that comes into the home twice a week. It has (somewhat) protected my sanity. She is a god send!

One more tid bit of information before I go; did you know dirty laundry and dishes multipy quicker than bunnies? They are having a hay day at my house.

Okay that's it. Sorry there is not a lot of good news; other than we are home. I'll take that over the hospital any day.

We are home!!

2010-11-03T18:01:00.001-05:00

I will try to update later this evening!

Tomorrow, Tomorrow, I love ya tomorrow, you're only a day away!

2010-11-02T23:53:00.002-05:00

Now that I've got you singing, I think it is true; we may just be going home tomorrow. Can't believe it!!

We effectively cleaned the poor little guys GI tract out yesterday and today; and he is a pooping champion. This morning though, the vomiting started again. The vomiting seems to largely be triggered by secretions that Matthew has in the back of his throat. He sounds almost gurgley. It's hard to explain. It's like you want him to clear his throat. And these secretions for some reason go haywire when he has his feeds running. And NO ONE has ever seen anything like this. Not the hospitalist, not pulmonary, not GI, nor any nurse we've talked to. J tube feedings usually cure the vomiting problem. No one seems to understand.

Matthew's feedings are running at a rate that he gets 6 hours free of the pump each day. And today, when he got his break; his secretions essentially went away, and he was a happy little boy.

Pulmonology was asked to come in again today and see if they could figure out any magic to help with secretions. When the very nice doctor came in (I have to say, I haven't met a pulmonologist here that I don't absolutely love..and I've met three) he looked in the back of Matthew's throat and was surprised by what he saw. The secretions were so thick, he said, that they almost looked like they contained pus. EWWWWWW. He said he probably has bacterial bronchitis, and it is possible to have this without a fever. He put Matthew on a regimien of strong antibiotics, and we are hoping this will help with the gross stuff that is gagging him. No one understands why the secretions become so bad with the running of his feedings; but we are willing to try this.

GI came through, and they have no answers for us. He was much kinder today; and he basically just told me that there is no surgery that will cure the retching; as this is not a reflux issue. He is not at all recommending a fundoplication (as the on-call doctor was) because the retching will most likely break down the fundo; and it would only fix reflux, and not retching. He states for a child like Matthew it would be very risky to do the surgery, and he does not see any benefit at this time. If Matthew would start getting a lot of aspiration pneumonia's then he would reconsider. He did, however, give me full liberty once we get home, to put Matthew back on a homemade blended diet. He even brought it up. He thinks it would be easier on his gut than formula; and help him thrive. He also thinks we should try to use prune juice instead of Mirilax. I would like to try this, too. He is very laid back in his approaches; but also was very frank with me, saying that there was not any way to stop the retching.

So, barring anything crazy happening; we should be on our way tomorrow. We have not fixed everything, but we have a plan. And I have a few back up plans should our plan not work. We have enough medical equipment at home to provide him what he needs. I may not get much else done some days, except taking care of Matthew's medical needs; but we are fortunate to have a great nurse that will now be coming to the house a couple days a week on a regular basis to give me a break. Depending on how our nights go; we may get a couple nights this week of coverage also; so we can all get some good sleep.

Here's hoping that the next blog comes to you from my living room!

Thank goodness for a new week!

2010-11-01T23:00:00.000-05:00

Well, here we are, still sitting at the hospital :( But today has been a better day.

Shortly after I posted yesterday's update of Matthew vomiting, I happily called the nurse and said; okay, lets pull the button. Get me the kit, I can do it. She was surprised by my words and didn't think that was part of the plan. So she paged the resident and he confirmed that he did not think that was part of the plan. So then they paged the hospitalist; and she too, said that we couldn't pull the tube and replace it with just the plain g-tube. I kinda lost my mind for a bit. We had expressively talked about removing the g/j and placing the g-tube. Why would I want to do that, you ask? Well, from what I understood from the GI doctor in the past is that when the j portion enters the small intestines from the stomach, that the tube can actually sometimes act as a"cork" in the lower sphincter of the stomach. When that happens, if you use the g-tube to administer food, then it cannot fully empty into the small intestine, this in turn causing the stomach to fill until he vomits.

So after the resident himself came and talked to me and I threatened to remove the tube myself after I got our spare g-tube from home (I know, not one of my finer moments), he convinced me to just wait until tomorrow morning. I told him I would think about waiting; but not to be surprised if I went ahead and did it. Well, thankfully for all involved, I calmed myself a bit; and then Steve and the kids came up and visited Matthew, and we all went out for supper. Before we left, we tried feeding him formula in the g tube, but he just vomited. So off went the feeds (I've lost track how many times we've done this) for the night.

I'm sure that my threats were heard about by all involved, and I believe Matthew was probably the first patient seen this morning. No one wanted me to pull the tube out, and I found it just a tad funny (in a sick sort of way) that if you start being the difficult parent you get all kinds of attention.

GI rounded early today and made their recommendations, and shortly after the hospitalists rounded. The doctor asked me when the last time Matthew had pooped. When I replied Saturday; she informed me that the x-ray they had done Saturday night showed lots of stool in the bowels, and also some barium. Barium is a liquid that shows up on x-ray; it is used in some procedures. She asked when he had had barium. Well the barium had been given last Monday for a test they had done. It was STILL in there!! Holy crap(pun intended), Batman; that can't be good!!

Then the lightbulb went off. If little was coming out of Matthew, and we kept putting more in; eventually his body would scream enough. The doctor likened it to if you eat a large meal, and then would try and eat again, you would eventually get sick to your stomach. She thinks this is what was happening. She ordered 2 enemas for Matthew, and after that to be put back on a regimen of Miralax. We would give the enema's and then start his food ever so slowly. We would gently introduce food back into his body and see what happens.

The first enema had astounding results, to say the least, and the second this evening was quite productive too. Food was started at 5cc's and hour and ran that way for 8 hours. At 10 pm tonight, the nurses started bumping his feeding by 5 cc's an hour until we get to 55 cc's/ hr; which will be morning. We will see how he tolerates this. So far, so good.

GI rounded again this evening, and rained on my parade. I was so excited that this could potentially be a simple fix. When asked what he thought, he told me, that he didn't think that was the problem. When I asked him what he thought was the problem he said he didn't know. I next asked him what he thought we could do to fix it, and he said "nothing". When I inquired about a fundoplication (as talked about by the GI on call yesterday) he said, that he would not recommend it for Matthew. It would fix the reflux, but not the retching. And with all the retching Matthew does he says it would ruin the fundoplication quickly. I asked him if he'd given up on helping him, and he was silent. He said that we'll just have to wait and see what Matthew does.

So we have immediately started "operation: prove GI doctor wrong". Everyone else we've talked to (every nurse, all the residents, the hospitalist who discovered this in the first place) seem to think that this is the obvious answer, and can't believe we overlooked it for so long. The hospitalist on this morning was fresh to the case, and believes that sometimes it just takes a fresh set of eyes to look things over and see if something easy was missed.

So all in all, I am glad I didn't pull the tube. Feeds are going well so far. We are praying they continue; because Matthew needs to get out the hospital and be home. His mother also needs to get out, before she makes a fool of herself anymore :)

Oh and one more nice thing that happened today:
They changed Matthew out to a "big boy" bed, so he and I could snuggle. We did and actually caught a pretty good nap together. Ah, the therapy that is done with some good snuggle time :) It heals what ails you.

Ok...

2010-10-31T13:57:00.002-05:00

So I guess I forgot how absolutely exhausting it is to sit in the hospital and do ABSOLUTELY nothing! I fell asleep and forgot to update the blog yesterday, and proceeded to take a three hour nap this morning. I'm sorry as I gotten quite a few phone calls and emails, so I have worried you guys unjustly. But I do have some good news. I think things are looking up.

We did a urine specimen; and it was fine, not sure where the blood was coming from??
Matthew is now 100% independant in the emptying his bladder department (at least since 10/30/10 @ 2pm). Just as quickly as the switch got turned off almost 2 weeks ago; it mysteriously got turned back on yesterday. So I guess I was wrong about the re-tethered cord thing. A hit to my pride; but I'll take it anyday over surgery for Matthew. Dr. P was right (again) and it sounds like it doesn't mean that this can't happen again. I guess the nerves can take up to 1 year to figure out what they need to do.
We tried Matthew back on his feedings yesterday; and with in 1/2 hour he was wretching again. So it was back to IV fluids. And the retching quit. Until his 8 oclock meds. We put his meds in the j-tube also; and within 2 minutes of administering his meds, he started vomiting. He slept perfectly all night, with NO mucous problems and woke up this morning with CLEAR lung sounds. We gave 1/2 of his 8 am meds and he started violently retching. We let him rest about 1/2 hour and then I decided to be creative and give his medications in his g-tube (vs the j tube) to see if that made a difference. He absolutely did perfect with it.
So we talked with the GI doc and the hospitalist this morning. We agreed to put all meds in the g-tube, and to try the j-tube for feeds 1 more time. If it doesn't work, we feel it is reasonable that all the excess mucous/retching is for some unknown, medically unexplainable reason linked to to the j-tube. Prior to the j-tube insertion, Matthew had issues with reflux/vomiting but not retching (they are two separate, very distinct issues). We will take out the g/j tube (at the bedside) and place a g-tube. If vomiting is still an issue (which it realistically may be) and as long as it is not accompanied by retching, Matthew will need a fundoplication surgery, in which to wrap the stomach around the top of the esophagus; which makes reflux not be an issue. The fundoplication is something we've tried pretty hard to stay away from, but we are reevaluating his need for this surgery. We are a couple steps away from that, and I am trying to take one step at a time!!

As I am sitting here writing this, Matthew's feedings have been restarted in his j tube for about 20-30 minutes. He is already starting to sound mucousy and is coughing. I have a feeling plan B (or P as I call it..we've been up and down the alphabet of plans with Matthew )will be happening at some point today.

As I was finishing typing this..Matthew threw up a ton of mucous. After 13 cc's of formula. 13 cc's. and now his tube feedings are off. The nurse is off to talk to the Dr. She will pull the g/j and put in a g tube.. we'll see how this goes.

Or Mabye Not

2010-10-30T11:51:00.003-05:00

So Matthew woke up this morning, and immediately started retching, and retching, and then vomiting. And then vomiting blood. He didn't stop for over an hour. His food is off. He is getting IV fluids. We are waiting to see the doctors. And to top it off, when I catheterized him this morning, I got bloody urine back. We have no clue what is going on. Guess he didn't want to go home after all. I'll update later after we have a plan in place.

10/29/10

2010-10-29T23:34:00.002-05:00

Well, mad mama got some sleep and was able to take on the day. I spoke with the neurosurgery resident in the early a.m. and said I would like to speak with the neurosurgeon. He said he would do his best to get him up here to talk to me.

The residents all rounded and there was not much new to talk about. Matthew's vomiting, and inability isn't any better really, but at least we have a plan in place. We are going home with more medical paraphenelia than I know what to do with. We will be going home on some 2 new medications also, one for the vomiting, and also zyrtec to see if that helps with the amount of mucous (we are questioning allergies). We the hospitalist rounded, she was very surprised to see that Dr. P hadn't rounded. See Dr. P is a very good doctor, and a very busy doctor. But this was unlike him. She put a call into his office to say that we very much needed to speak with him before discharge.

Around 2 pm Dr. P came through. While I never got a straight answer as to why he didn't round any earlier than today, he gave me a good explanation of why he didn't think his cord was really tethered. It is a long explanation, and it has to do with gravity, and the way Matthew was laying in the MRI table, and the fact that the end of the nerves looked like they had some "slack" in them, and were not pulled tight, but rather just laying there. It's very hard to explain and put into words, especially when I had three nice diagrams drawn on the white board just to explain it. He says that he has never had one retether, and that it is virtually impossible, but he feels we should give it more time. He said patients such as Matthew can loose bladder function for a couple of months, and then regain it back. He is confident that since Matthew gained his ability to pee back so quickly after surgery, it should not be a problem again, but it takes time for the nerves to fully heal. He believes that as his bladder function comes back, his bowel function will follow suit.

So all in all, it sounds as if we will be cleared for discharge in the morning. We have a lot of teaching with new equipment to do, and we also need to get an EKG before we go home, as the new medication he is on can affect the heart (wonderful!..not really). I would guess it will be late afternoon, before we get back on the interstate and head for home, but oh, it will feel so good to be there.

The picture above is from this stay, and taken with my cell phone; and I have a few others that I need to take off my cell, but am too tired to do so right now. It will have to wait until another day :)

Mad mama

2010-10-28T23:44:00.002-05:00

I told myself, I wasn't going to do it this time. I was going to be the sweet, but direct mom, who didn't let her temper get the best of her. Well, I lasted 6 days. This evening, my temper has gotten the better me.

See this morning, around 6 am, the neurosurgery resident came to the floor and said that Dr. P (our neurosurgeon) doesn't really think Matthew's cord is tethered, even though the radiologist said it was, and that Dr. P would be up today to explain what other tests we needed to do to confirm one way of the other.

Then the other specialties started floating through.

1st the primary resident, then the GI resident, then the pulmonologist. While the pulmonologist was in the room, Matthew performed one of his coughing/puking/retching episodes, as if cued to. The pulmonologists remarks were "wow that's really impressive". Not what you especially want to hear, but I was so thankful she was able to see what he has been doing at home. She thinks that he has a good strong cough and has the ability to cough up what he needs to, but not get it anywhere. So she ordered a pulmonary vest for him, which is similar to the percussion therapy, and "cough assist". I'm still learning about this, but essentially it helps Matthew by emulating a cough. It pushes air into his lungs and then pulls it back out. It has pressure settings. (Note to self: I need to take pictures of these things). She thinks our vomiting episodes may be actually issues of mucous and not feedings. So we will have our work cut out for us at home. Breathing treatments twice a day, vest treatments twice a day and then cough assist twice a day also. Along with meds and such. My morning routine just got a bit longer.

Next the the GI doctor accompanied with the GI resident, and they had no new plans for today. They were happy with the new things pulmonary had decided and helped with his Robinol dosage. Robinol helps dry secretions, and Matthew didn't need as big of a dose as they were giving him. So we halved that, and that seems to be helping.

Then the hospitalists rounded. They thought from their standpoint that late today or early tomorrow would be a good time for dismissal AS LONG AS we could get a plan on board for Matthew's urinary retention/possible re-tethered cord. They felt we had adequately addressed the vomiting issue; even though he is still vomiting some, we have an idea of why, and how to help him minimize this. We decided to up the rate of his feedings ever so slightly, as to give Matthew some time off of the feeding pump.

Shortly after lunch, urology rounded. They were comfortable with the plan for Matthew; cath as needed until we can resolve the urinary retention, and see our urologist in Lincoln.

Then we waited. And waited. And waited. And the longer I waited, the madder I got. See if we are going to do something about this tethered cord, whether it's there or not; we gotta get ON THE STICK! Tomorrow is Friday. Nothing of value happens in this hospital over the weekend. No MRI's, no surgery unless ABSOLUTELY emergent. We needed to get any further testing scheduled as soon in the day as possible; because Fridays are busy in the OR with everyone trying to get things done before the weekend.

At 6:30, when we had seen no neurosurgeon, I knew we weren't going to. I asked the attending resident, and her basic response was that we couldn't make Dr. P come see Matthew. I understand that, but how about a phone call. You can call on your way home in the car. I just want to have a plan. A plan that gets this fixed for Matthew as quickly as possible, so we don't permanently lose bladder function. A plan that doesn't have us sitting in the place it is easiest to get sick (i.e. the hospital) any longer than we need to. I'm not real excited about sitting here all weekend, but I'm not excited about having to come back for more testing after discharge. I'm impatient. The field of nursing I work in doesn't allow for anything less than quick decision making and making things happen in a timely fashion. It makes it harder for me to sit and be patient. And even harder when it's MY BABY. And MY BABIES bladder and pain control.

I plan on getting some answers tomorrow. Sooner vs. later. Asking some VERY pointed questions to Dr. P (if we get to speak with him); hopefully with tack and grace. But in the mean time; I'm gonna sit here and steam and simmer. Cuz this mama is mad.

10/27/10

2010-10-27T22:17:00.003-05:00

Matthew is asleep; sleeping so peacefully. That has been one thing I have furiously protected while in the hospital. The nurses have been told that midnight-6 am is sacred. No interruptions, no vitals. Everyone has been so good; if they need to do something in the middle of the night, they are so quiet, if fact I don't even hear them. Matthew has kept his schedule so nicely; which is something that doesn't always happen in the hospital.

Today, Matthew's MRI was scheduled for 2:00 pm. Around 9 am the anesthesiologist came to talk with us. He said we were going in 10 minutes. I was a bit shocked but happy to get the MRI over and done with. Matthew was back around 12:00 and did wonderfully for the procedure.

Here's the updates for the day:

Urology: did not come through today. Kidney US was fine as reported by the hospitalists (they are like the general pediatrician while you are in the hospital). We don't need anything further from them.

Pulmonology: did not come through either. His CT scan was okay from yesterday, and we have started Matthew on CPT (chest percussion therapy), which basically is a machine that is put over his lungs and vibrates. It helps shake the gunk out of his lungs so he can cough it up, thus helping prevent a pneumonia. We will go home with one of these devices.

GI: we started Matthew's feedings back up after the MRI, and GI is starting a changing out a med with a new medication that will hopefully help with the vomiting cycles he's been having (called "cyclic vomiting") This med comes highly recommended by his Minnesota epilepsy doc. He says he sees this help a lot of kids that have similar issues as Matthew. We also adjusted calories for Matthew with the help of the hospitalist, as she feels he is getting too many calories; and gaining weight too quickly (first we can't gain weight and then we gain too quickly; geesh)

Neurosurgery: The resident came through this afternoon. The hospitalist had me come out to the desk to read the MRI while we were figuring out calories for Matthew, and the result came back saying he had a tethered cord AGAIN!! This would explain why he hasn't been able to empty his bladder again, and is having "poopy" issues. His symptoms mimicked those he had this spring prior to his tethered cord surgery. I was told by the neurosurgeon last week the recurrence of his type of cord tethering was "virtually medically impossible". Leave it to Matthew. The resident stated he would relay this information to our neurosurgeon, Dr. P, and get back with us. I waited all afternoon, with no site of Dr. P. The nurse finally called the resident around 7pm and he told the nurse that Dr. P would be by in the morning, but that he did not agree with the radiologist's findings, and will maybe do a "prone MRI" (Today's MRI was a "sacral and lumbar MRI".) I was really hoping to see the neurosurgeon today and get surgery scheduled ASAP; as in tomorrow. I'm not sure what will happen with this tomorrow.

From a vomiting standpoint, Matthew has done well. No vomiting for 48 hours and he is at his full strength of feedings for home. The hospitalist asked me today if I would be okay working on upping the rate from home; as his current regimen he is off the pump for 6 hours during the day. I excitedly said yes. So if it weren't for the whole bladder/questionable tethered cord thing, I think Matthew would be ready for discharge tomorrow. But I also want to get to the bottom of the urinary retention stuff too.

This evening, Steve went to parent teacher conferences, and I got to join in via speaker phone from Steve's phone. It was wonderful to hear all the good things my kids are doing at school. Their grades are good, and the teachers all had such positive things to say about them. It made the end of my night great!! Steve took them out for ice cream afterwards to celebrate. I am so proud of my kids!

As I sit here tonight, I am reminded of where were a year ago. Today started the anniversary of Matthew's 40 day stay in the hospital last year. That was a very scary, scary time for us. Tomorrow will be the day 1 year ago when Matthew was emergently taken to the PICU and put on a ventilator because his seizures would not stop and he was so sedated that he couldn't breathe on his own. I went back today and with tears in my eyes, read about our day, and relived it in my mind. What a scary time. Even though we are in the hospital, I am so glad it feels different this time. SO GLAD.
Here is a link for those of you who would like to re-read (or read for the first time;) the ordeal that started 10/27/09

Hospital stay

2010-10-26T11:43:00.002-05:00

We are in hospital again :( We've been here since Saturday. Matthew has been having issues with vomiting again. They started last week, and progressively got worse. He was even vomiting with pedialyte. So by Saturday, the GI specialists felt like it was time for him to be admitted (we were in phone consultation with them daily.) Once here at the hospital, it was decided that we should try to "rest his gut" for a day or two. Sunday was a quiet day, with IV fluids running, and only small amounts of retching.

Monday was a flurry of activity. We had so many doctors and specialists in to see Matthew. We are trying to determine why he is vomiting. Many times before he vomits, he is coughing violently. Is he coughing due to reflux? Or is it respiratory? Or is it dysmotility? (the inability of his food to move from point A to point B) Is it a combination of the above? At the same time this is happening, Matthew's body also decided to quit allowing his bladder to empty, so we are cathing him. He also is having a hard time having a bowel movement. It's not a constipation issue, it's an appropriate consistancy, it just won't come out. So he is being complicated. Thank goodness (so far) his seizures have not flared up.

So yesterday, he got a chest x-ray (due to the coughing, and "junky" sounding lungs); and a CT scan of his brain to check shunt function, and a modified upper GI, to make sure his feeding tube was emptying in the proper place in his intestines. All of these tests came back fine; other than some atelectisis of his lungs, which we see frequently.

Neurosurgery is consulting to make sure his spinal cord has not re-tethered. They say this is pretty impossible with the type of tethered cord he had, but they also said that Matthew doesn't always follow the rules. They also say that the nerves that control the bladder and bowel that were affected from the cord tethering can take up to a year to straighten itself out. And during that year bowel and bladder function can ebb and flow {great...not what I wanted to hear}

Urology is consulting due to the neurogenic bladder. They would like a kidney ultrasound to make sure his kidneys are not being affected by the urine holding (when we cath him he can have upwards of 8-11 ounces in his bladder,which is alot..so we want to make sure we are doing exactly what his kidneys need, especially since his kidneys are a bit abnormal)

GI is trying to figure out why he is vomiting, and they are handling his feeding strengths and rates. The plan yesterday was if he didn't tolerate his feedings, they would stop his feedings in his feeding tube and he would go on TPN (nutrition in his IV) for 5-7 days and we could have been looking at a longer stay. So far we are avoiding the TPN

Pulmonology came in today per my request, because a lot of the vomiting seems to be a result of coughing, and mucous production. Does he have allergies? Is he aspirating? Why all the mucous and where the heck is it coming from because it's not coming out his nose, and he doesn't have pneumonia.

Those are the basics in a nutshell. Although I may have left out a few things since during this posting, I have been interuppted three times with different medical personel visiting. It's a busy place, this little room of ours.

We are going to do a MRI either today or tomorrow to check his spinal cord, and a kidney ultrasound today. Nothing else that I know of is scheduled. I will sneak in a nap and hopefully some quiet time with Matthew.

In our free time

2010-10-20T07:16:00.001-05:00

My boys have found a fun way to entertain themselves. They found an extra piece of flooring my husband used to remodel our main bathroom, and starting having fun with it. I can't remember which boy started it, but it has provided hours of entertainment.

Some would say this is dangerous; but they are boys. And they are having a lot of fun. And it's fairly innocent; so I say, go for it!

Weighty boy!

2010-10-18T15:47:00.002-05:00

Last week we took Matthew for a follow up appointment to his GI doctor. They are helping us with his formula, finding the right amount of calories for him and helping us with his reflux/vomiting issues.

Matthew weighed in at 27 lbs 15 oz. and was 33" tall. When he left the hospital 4 weeks prior to that he only weighed 23 lbs 5 oz and was 31 1/2 " tall. So almost 5 lbs in one month! Crazy!!

Now that he is off of the keto diet, he is not so limited in his calories, and we can give him better nutrition. So good, that we have had to decrease the calories just a bit because we do not want him to continue gaining 5 pounds every month. He feels solid now though, which is good. He seems stronger too. And I am happy that he seems so much more happy.

We're still working on seizure control, but we are not quite there yet. We go to Minnesota in a couple of weeks to see his epileptologist and are hoping to fine tune his medications.

Comments

2010-10-11T07:00:00.004-05:00

Recently I read this post written by another special needs mom who talked about being her child being "secretly disabled" when he was little. One of things she talked about was the comments she would get about her son when he was little. I have to say that sometimes this is one of the hardest things for me. See in our home, in our world, Matthew is well, Matthew. He looks and acts normal to us. Well, his normal. I often forget what outsiders see.

Take for instance; last week, I was getting a couple things at Target and took Matthew with. He was in his stroller (wheelchair) WIDE AWAKE, and the clerk made the comment; "Wow, he is sacked out! What a great way to be able to get all of your shopping done!" I just smiled politely.

And then the other day, Mason had forgot his lunch and I had to run it to him at school. His room is fairly close to the front door, it's a small school, and I was in a hurry. So I didn't put Matthew in his wheelchair. I just grabbed him and carried him in. At the front door, a man I didn't recognize said "Wow, he couldn't get any limper if he tried!" Well. What do you say to that?

I just don't know what to say. Katy, said it in her comments section so well. She said she is not hurt or offended, it makes her feel uncomfortable, and likened it to when people call you the wrong name by accident. I hear these comments so often, that the "human-ness" in me wants to set them straight. But I know they don't mean ill-will to their comments. And I know the right answer is, that I am supposed to use these comments as education moments. I mean, I could pull everyone that says something aside and give them a 15 minute speech about Matthew, but that could be very cumbersome and uncomfortable for the reciever or my message. I just usually smile politely and keep going. I mean, they are noticing him right?? Which it is pretty hard not to notice his amazing cuteness :) :)

I am not ashamed of Matthew, quite the contrary. And I'm not looking for sympathy by writing this. I'm just putting my feelings out there, because, by judging the comments written in Katy's blog; I'm not alone. A lot of us deal with this. And writing is the way I process things. So thank you all , for my free therapy session. :) I think I feel better.

If you have time, read the post I linked to above. Then read the comments. It's a good read. Promise.

Big Brother

2010-10-08T13:00:00.000-05:00

Mason is 7 weeks or so into 1st grade, and he all of the sudden has exploded in his reading ability. It is unbelievable. The other day, he found one of Matthew's books, "Silly Suzy Goose", and started reading it to him, while I was cleaning Matthew's room after his nap. It was so adorable. And Matthew LOVED it. We need to do this more often!

Brotherly love. So tender and sweet.

Thank you Jesus, for my sweet boys!

Crafty girl: Part 4

2010-10-07T07:00:00.000-05:00

I'll be occasionally updating my "crafty girl" series as I make new little creations. I have a bunch to show off in the next month or so.

When we moved into our new home, I was so excited to have a spare bedroom. We have a place for company to sleep, and, I have my a sewing room. I've been able to do a bit more sewing, because I can leave my machine up and work a little at a time. Before, it sat on the kitchen table and had to be put away when not in use.
Last month my cousin had a little girl. And no little girl should be without a pretty dress. I whipped this little dress up below and shipped it off. I thought it turned out sooooo cute! And it was oh so easy. I can't wait to see her in it next summer!

What do you think??

Church campout

2010-10-06T07:00:00.000-05:00

This last weekend, our family (minus Micah, he spent the afternoon and night at a friends house) spent the whole day Saturday out at one of our church's campgrounds with the Adventure club group. Adventure club can best be likened to a Christian form of Boy scouts or Girl Scouts group. It is for 1st-4th graders, and they learn all kinds of things, and earn badges and honors for their accomplishments.

The day was chilly. We got out to the camp early, and had worship around the campfire. Then the kids all went off with their leaders for a scavenger hunt and nature walk. They also took rides on the rope swing. Matthew and I stayed back, and stayed warm around the campfire.

We ate a potluck lunch at the lodge, and spent the afternoon visiting, staying warm and letting the kids play, and work on honors in their groups.

Then evening came and it was time for another campfire (although, I'm pretty sure this fire was lit all day) and a hot dog supper. After supper we gathered for worship.

Oh, how I LOVE worship around a campfire. Matthew loved it, too. He smiled and cooed through the whole thing.

Mischievous grin from the cutest 6 1/2 year old I know!

And then...bring on the marshmallows! Can't be a complete camp fire with out marshmallows!
That one looks a little toasty, Megan

As the sun went down, it got REALLY cold. Matthew and I snuggled in.

And Steve, well, Steve stayed crouched close to the warm fire.....

Roasting marshmallows and dough boys,

and by the judge of Mason's face in the picture below....
snitching someone else's doughboy's too :)

We had a really good time. And when it got too cold and everyone else was talking about "roughing it" in their tents with the forcasted low temperature of 37 degrees, we packed up our goods and our kids, and jumped in our already running van and headed for our nice comfy beds.

WHO?????????..................................

2010-10-05T07:00:00.001-05:00

told my baby.....

It was okay to grow up and look like a

Toddler??

What's new in Matthew's world

2010-10-04T07:00:00.001-05:00

Going off the diet has been hard on Matthew. While his Gastrointestinal system thanked us greatly, his brain did not. He was having in an upwards of 25-30 seizures a day. We tried a new seizure med, and it didn't touch them; in fact it made them worse. So we're weaning off that and waiting for some lab work to come back to see what the next course will be for Mr. Matthew. Weirdly, around Wednesday, we saw a drastic decrease in seizures, for no apparent reason. We wonder if his body was going through withdrawals, or if they will pick up again, like they were before.

Since being off the diet, Matthew has put on over 2 pounds. He is 25 lbs 10 ounces. And I can tell! He is getting HEAVY!

Going hand in hand with the stopping of the ketogenic diet; we have been able to take Matthew off 3 medications he was having to take because of side effects of the diet. That is a very welcome thing!

Matthew currently has a horrible cold. At first we thought it might be allergies, but now, I've got the sniffles and a sore throat. Bummer.

Matthew is finally getting teeth! As of last month, he was only sporting 4 little front teeth, and was breaking through a molar. Today, he has the two on top, 5 on the bottom, 1 molar on top that is poking through and the molar on the bottom. The bad part is the molar on the bottom came in VERY crooked. We now have an appointment to see a special needs dentist in December to talk about his particularly peculiar mouth. He doesn't even seem too extra fussy about it.

We are working on oral feeding again. He currently gets 4 "bites" a day. He HATES silverware, but doesn't mind mommies finger too much, so that is what he is using for his utensils. Baby steps, baby steps.

Matthew has all of the sudden found his voice again. He is cooing a lot and such a happy guy, even sick with a cold. We went out to a camp out this weekend (more on that later this week) and while singing worship songs around the campfire, Matthew could NOT stop smiling and "singing" along. He absolutely loved it.

We have increased his standing time, and braces wearing time. He is currently in his stander 1 hour a day, and in his AFO's (ankle-foot orthotics.."foot braces") 4 hours a day. He doesn't seem to mind one little bit, and we are seeing the benefits of stretching his heel cords in his braces. We can now get his feet almost at a 90 degree angle. {Tight heel cords are one the things that easily happen to children and adults who are not walking or upright}

We are in the process of changing home health companies, because our favorite nurse left to go to another company. We found out last week that we too, can change companies and follow her. We are so happy!

Would you join me...

2010-09-22T10:31:00.004-05:00

In praying for a sweet little family that I have come to "know" over the past weeks? An aunt of a child born with hydrocephalus contacted me telling me about her sweet niece, Seeley, that had been born in Omaha 10 weeks ago. She found my blog through Michelle's blog and we had been emailing back and forth for the past 8 or so weeks. Recently Seeley's mom, Lori, had also commented on my blog. They have not had the most positive stay in the NICU, but after 9 long weeks, the plan was to do a g button/fundoplication surgery and she would be able to go home within a couple weeks. I was cheering with them.

The surgery was Monday, and I recieved an email from Seeley's aunt today saying that Seeley had contracted an infection from the surgery and went into cardiac arrest early this morning.. They were able to bring her back after 45 minutes, but the damage has been done, and they have said that Seeley is now "brain dead. The parents will have to make the decision to let her go. This absolutely breaks my heart. It reminds me of how quickly things can change.

If you are so inclined...would you join me in praying. I know the family would greatly appreciate it!

Okay....

2010-09-16T21:22:00.002-05:00

....so I haven't updated in a while. Some times it feels like the longer I take between updating, the harder it is to blog again, and with facebook it is sometimes easier to give a 3 sentence update and be done. Anyway...
{disclaimer: there is much talk of mucous, vomit and diarrhea in this post. Continue reading at your discretion}

My last post was on the 7th (a Tuesday). Matthew was still doing a lot of vomiting Wed. and Thurs. and then when I came home from work on Thursday evening, Matthew started vomiting again. I went in his room and he was throwing up blood. And he couldn't stop. Then he started having diarrhea, and within a hour and a half he was still vomiting blood and there was also blood in his stool. We called his GI doctor and he told us to head to the hospital. We went to Omaha, and once we got there he continued to vomit for over 2 hours. It was horrible. His feedings were still going in his J tube (his small intestine) so it didn't make sense why he was vomiting. They had me stop his feedings anyway and they started IV fluids. We were admitted in the early morning hours on Friday. It was decided on Friday to let his "gut" rest for 24 hours and see if the vomiting subsided. Like magic, about 2 hours after the feedings were turned off, the vomiting subsided and he was able to rest most of Friday.

Saturday: the decision was made to start pedialyte to see if Matthew's body would tolerate that. Things went perfectly. No vomiting, and he was happy.
Sunday: During rounds we decided it was probably best to try to take Matthew off the ketogenic diet. We had made a plan with our Minnesota Epilespy docs that this would be our next step if the vomiting continued. Within 1 1/2 hours after starting the formula that would be used to help wean him from the diet, Matthew started sounding very mucousy in his throat and then he started vomiting. The diet was stopped again, and pedialtye restarted. The doc's decided Surnday evening that we would start 1/2 strength "weaning formula" 1/2 strength pedialtye. All evening and night he was so mucousy and started having diarrhea again. I spent most of the night suctioning his throat so he could breathe past the mucous. In the morning, he starting vomiting again.
Monday: With the start of him vomiting again, his food was again stopped and pedialyte started. How frustrating. I'd done some research on soy (which is the main ingredient in his formula) and everything I read said that increased mucous was a sign of a soy allergy. I couldn't get it out of my head that maybe was allergic to soy and that is why we've always had such issues with vomiting since the start of the diet. And especially since it was now going straight into his intestines and not mixing with stomach acid that maybe it was really affecting his body. So I discussed this with the GI doc's. They only raised an eyebrow at me. They didn't quite believe me or buy my idea. I didn't care though. It made sense to me. They did think it would be beneficial for us to try to go off the ketogenic diet cold turkey and try a "elemental" formula. This formula has no soy or dairy added, and the proteins are broken down to help him digest them. They would start 1/3 strength in the evening. The rest of Monday went well. He did well on the new formula. No vomiting, no mucous.
Tuesday morning we went to 2/3 strength formula. The doctors said if he would tolerate this, he could go home. Six hours into the formula, he was doing beautifully. We got to go home.

The only bad part now, is we are seeing a LOT more seizures. Which in a way is good, because I was questioning whether the diet was working (it was doing some good...boo that we can't go back on it...as far as I know, you cannot be on the keto diet allergic to soy and dairy)

We have started a new seizure medication to help with the seizures, but it will not be up to full strength for 3 weeks. It's hard to see him have up to 15 seizures a day. The weird thing is though, that he is SOOOO happy now, he is vocalizing again, which he had all but lost on the keto diet (I don't understand that, but we do know it not a "vocal seizure"; he is doing it response to us talking with him)

We have seen essentially no vomiting. The last two days, in the morning, he has vomited, but it is quick, and he doesn't continue on for 20 + minutes.

Matthew's arm is doing much better. It is still sore, and you have to be careful how you touch it, but he has been wiggling it out of his little homemade sling, so we made the decision today not to use it anymore. He seems to do okay with that. We aren't having to give him pain medicine around the clock either.

Matthew started private PT up again this week. I will try to post about that later. I think it's a good fit. I was nervous about starting outside therapy again, but I think this will be a benefit for Matthew.

So that, I believe, is all of our life updates for the last week and a half. I promise, I will try to post something next week that doesn't have to do with hospitals. I am tired of living there, and I think Matthew would agree :)

The last 5 days....

2010-09-07T07:00:00.000-05:00

{ Warning...this is incredibly long...that's what I get for not updating for awhile...it's been a crazy couple of weeks}

Were incredibly taxing for our family and especially Matthew. Let me back up just a bit first. To the weekend of the 21st. Matthew was having increasing seizures and in collaborating with his doctors in MN, the decision was made to go to the ER 2 Saturdays ago to get IV fluids and rest his belly. We stayed through the weekend and saw GI on Monday and we made the decision to try a GJ tube for Matthew due to his increasing vomiting and also not gaining any weight since December. His food can go in the "J" port and that will allow him not to vomit his formula because that enters the small intestine vs the stomach. We will still work on oral feeding and giving him some food in his G portion of his tube to keep his stomach active. But we need to put some weight on the little tiger.

All was well and good for a week. Then, last Saturday (the 28th) Matthew started vomiting more again, but this time is was just mucousy..and then he couldn't stop. He would just retch; which is not fun to watch either. Each day it got significantly worse. Tuesday night after I got home from work, I stayed up all night long with him. Wednesday morning, we took him to the GI's office for them to check him out. He consulted with pulmonology because he was thinking he may have pneumonia. His chest xray was normal. We know that whenever Matthew gets intubated (as he was during the GJ placement) that some reaction is set off in his body that makes him produce massive amounts of mucous; which he has a hard time dealing with. I'll save you all the rest of the details; but suffice it to say, it's not fun for Matthew.
So Wednesday left us with little answers and I took off for work again as soon as we got home from the dr.'s (with no sleep yet). When I got home shortly after 1 am, I could hear a weird sound coming from Matthew's room. I ran in, flipped on a light and he was choking; on his own vomit, and Steve was sound asleep in bed. I quickly flipped him on his side, cleaned him up and got suctioned out. He (and consequently me) then spent the whole night awake, he couldn't quit vomiting.

Thursday, he woke up with a fever. I threw in the towel. That was it. We were headed to the hospital. I was sure he'd aspirated the night prior and had pneumonia. We were admitted to the hospital on Thursday. Thursday day and Friday night were both pretty rough for him. He was on and off oxygen. He threw up a lot. We started a new medication to help with what is known as "cyclic vomiting". It makes him drowsy, which is not especially good when he needed to be alert as possible to cough and breathe. When he was on oxygen Friday night, the on call Dr. was called and she ordered lab work and a chest xray for the morning for Matthew.

Saturday morning, Matthew looked like a new kid. He was off oxygen and had slept fairly well. Lab came to draw blood and then, THEN xray came. Matthew HATES xray's; because he hates being held down. He HATES his arms being held above his head. I immediately jumped up and started talking to him and getting the head of his bed lowered so they could do the xray. I said, "let me know where you want me to be". And the tech immediately replied, oh you can just go over there {pointing to my bed}, we will be done in a second. I chuckled and sarcastically said (cuz I was WAY overtired by then) "well, then let me know when you want my help, because he is very difficult to position and doesn't like his hands being held over his head." She again, quickly replied that they didn't even bring me a lead vest, so I wouldn't be able to help. I had smoke rolling out of my ears. I stood up and walked out of the room for a second. I went to the nurses station to put my dirty breakfast tray away, and told his nurse that they wouldn't let me help. She rolled her eyes and said, " I don't know why they do that". I then went back in the room and they were still struggling with Matthew. He was crying and arching and twisting the best he could. The tech had his arms pinned above his head and the other tech was trying to position the film on the side of the bed. They finally got the picture they wanted and then had to do another with the film under his body. They positioned him for that xray, and he was still screaming and arching. The second tech would just grab his right arm and pull him with it towards her to position him. I'd had enough. I asked them if they were done. They said they were and I picked up Matthew. I held him and was comforting him and they offered to help me get him back in bed, twice in fact. I couldn't even look them in the eye. I told them no, I was fine. I just stood there and held him until he was almost asleep. When I layed him back in bed, his right arm just flopped on the bed. I noticed it right away. I took his limp arm and tried to lift it over his head. He didn't fight me with it, he just screamed. I ran and got his nurse and showed her. She immediately called radiology.

They were back in our room in 15 minutes. The had 3 techs this time. They said the pictures didn't turn out well, and inquired about his shoulder. I told them (it was more of a yell) that they were not touching him. Even if it meant no xray. I would NOT let this happen again. Both tech's were a little defensive at first, but I stood my ground. They WOULD NOT touch my baby. NO WAY. They offered to let me position him this time (hmm...funny) and a different tech would help me. Both tech's profusely apologized, but I was furious. As soon as the scan was over, Matthew immediately fell asleep.

The pediatrician was sent to our room next. She said it was a good sign that he didn't cry when she touched his arm, even though he was asleep; but order shoulder and arm xrays just in case. She said we could wait till he woke up to do them. She said if he had a good afternoon we could go home in the evening. Both he and I took a three hour nap.

When I woke up, I felt a bit sheepish. Certainly there was nothing wrong. It was probably just sore. We went down for the xrays, and the first techs were no where to be found. We had 4 (!!yes, 4!!) techs in the room, and they were doing anything I asked. I did all the positioning and they were super patient with him. (I'm sure they'd been warned). Two hours later the pediatrician again stopped by and asked how we were doing. From a vomiting and oxygen standpoint, he was doing well, but Matthew still wasn't moving his arm and he had whimpered when we did the xrays of his arm. She went to go look at the xrays and when she came back she sat on my bed and told me the horrible news. Matthew's humerus was broken (the big bone of the arm) and up by the shoulder. I was livid. She said she would talk to the orthopedic docs immediately and let me know what they said.

I called Steve, and if I thought I was angry, it didn't even compare to Steve. After we talked, I told him we'd be home soon. As I was packing and waiting to talk to the doctor again, Steve showed up. He was so angry. I've been married to the man for 14 years, and have NEVER ever seen that side of him. Papa Bear was here, and it wasn't good. After much talking on his part to the house supervisor and the administrator on call, he was able to speak to the tech who we believe did it. He wanted answers. I'm not sure he got the answers he wanted, but he got to at least talk with her. We was angry, but remained pretty calm. His words were strong though.
Being it is was the holiday weekend, I know not much will happen until today. I would imagine I will be speaking with someone from the hospital today.

The ortho said he would splint it on his own, or we could wrap it to close to his body. They let us go home and said we can follow up with ortho in a couple weeks and it should be completely healed by then.

So that is it, in a really big nutshell. We have been home two days, and while he is fairly uncomfortable when we move it, he doesn't exactly like it wrapped either. I am still trying different ways to wrap it to see if he'll tolerate it better. His vomiting has majorly decreased and he is completely off oxygen. We've seen a couple smiles even.

I get sick to my stomach when I think about what happened. I should have just jumped in there and made them get me a vest so I could help. He always does better when I help. But, I can't beat myself up. It wasn't my fault. They were pretty adamant they were getting the xray, no matter what it took. Unfortunately, it cost Matthew. I can guarantee you it will NEVER happen again. And I hope the tech has learned a HUGE lesson. I know the hospital will do a full investigation, and I will make sure of it.

Sweetest two littlest

2010-08-26T08:10:00.004-05:00

Mason cheering Matthew on while we work on "trunk control".

Ahh...I love these two littlest of mine

School has started!!

2010-08-23T07:00:00.000-05:00

Last Wednesday, school started for our kids. Here is our traditional "1st day of school on the porch picture"

Micah, 7th grade

Megan, 4th grade

Mason, 1st grade

Double Digits

2010-08-21T12:00:00.001-05:00

This beauty turned 10 years old today! Can't believe my baby girl is 10!

Happy Birthday, Megan!

Niagara Vacation: part 3

2010-08-13T21:28:00.006-05:00

After our morning and afternoon at the park on Thursday, we decided we wanted to go take a ride on the Maid of the Mist (a 20 minute boat ride that takes you right up to the falls) with everyone before heading back to the hotel for the evening. On our way to buy tickets we saw a wedding going on. So we decided to "attend" it.

{It slightly creeped me out at the age difference between the two of them. She could not have been more than 25 or 30 and he was well in his 50's}

On to the Maid of the Mist. Here is a picture of the boat fully loaded and heading to the falls..

Below is the best picture I could get while on the boat. I put my camera away shortly after this because we were getting SOAKED! Matthew DID NOT like the wind on the boat and getting wet. He was not a happy camper during this part of the trip.

These are called the American Falls.

After the boat ride, we went and stood up on a observation deck and looked out across the falls..

Then we decided it would be fun to go take the Cave of the Winds tour. This is a series of bridges that take you right down to the bottom of the American Falls and the Bridal Falls. Again, we got soaked! But it was fun! This is the deck that you walk up (I took this picture the day before from the Canadian side)

Close up of the Falls
Steve, Micah, Megan and Mason prior to getting soaked!

Kristen and I

Matthew decided to sleep during this part of the trip, and their was a nice place to park his chair and still be able to look at the falls. Steve and I took turns going up the stairs so as not to wake up Matthew..he wouldn't have liked the water anyway..

After the Cave of the Winds, we headed back to the hotel to change, and then decided it was high time for some supper. We headed off to Bob Evans, a restaurant I had never heard of, but quickly became a fan of. We celebrated Elisabeth's Dad, Donald's, birthday. It was a great ending to our evening.

Niagara Vacation: Part 2

2010-08-10T12:00:00.001-05:00

Wednesday we decided we would view the falls from the Canadian side, so we once again crossed the border and took in the views of the Horseshoe falls.

This was an "old scrow" that has been stranded in the upper rapids of the Niagara river since 1918Upper rapids of the Niagara River

Kiddos and Daddy posing at the falls

Horseshoe Falls

Then it was on to lunch. We were so excited to meet up with the Sorensons including Lisa's sister and brother, and the Stamm's for lunch.

Kristen and Lisa, talking

After a late lunch and more walking around we decided to head back to the hotel, and meet up with the rest of the group. We ended up sitting by the pool and visiting till late in the evening.

Thursday, we had planned to meet up with all of the families for a day at the park. What fun to be able to sit and visit with everyone in the same place and get a chance to see all of our children in the same place.Some of the guys, standing around and visiting

Our hydro kids: L to R: Tyler, Elijah, Isaac, Elizabeth, Matthew, Cayman, and Owen

Another picture of Isaac, Elisabeth, Matthew and Owen

The siblings

And the wonderful mommy's: Diane, Amanda, Jennifer, Michelle, me, Lisa and Kristen.

New York Vacation: Part 1

2010-08-09T22:02:00.005-05:00

Last Sunday, we headed out late at night to start our first part of our vacation. This year we got the opportunity to go to Niagara Falls, to meet a bunch of families we had come to know via the internet; families who also have a child that is affected by hydrocephalus. Our trip would take 17 hours, so we decided to make a week long family vacation out of it. Sunday we decided we would drive through the night, and see how far we could get Monday before we stopped. I drove through the night and we made it as far as Toledo, OH on Monday. We did, however make a surprise pit stop at our friends, Kristen and Mike's before stopping at the motel. The kids traveled exceptionally well and we stayed in a nice hotel with a pool and let the kids swim for the evening. By 8 pm though everyone was tired and we went to bed early to start our next day.

Tuesday we decided to drive up through Detroit and then through Canada to get to Niagara Falls. Once we got to Canada, we decided to take the scenic route for a bit and drove along the shore of Lake Erie. We stopped for lunch along the Lake and to hike around a bit and explore.

After taking the scenic route for a bit, Steve (aka speed racer) decided the interstate was more his style. So we traveled the rest of the way via the canadian interstate. Their were signed posted everywhere that stated the speed limit was 100 kilometers/hour, but no one seemed to be obeying this law. Steve is never one to dawdle or be passed in traffic and he kept up well with the rest of the people. Good thing I slept during this portion of the trip. I woke up to this :
We crossed the border again into the United States and began looking for a hotel. We had been "winging-it" as far as hotels went, but a hotel was hard to come by that evening. We ended up staying about 15 minutes out of Niagara Falls. We knew Wednesday was going to be a big day for us, as we would be meeting everyone in our group, so we just lets the kids swim and called it a night.

26 months

2010-07-20T08:08:00.004-05:00

Hard to believe this little guy has been in our life for 26 months.

Hard to believe how much our lives have been changed since his arrival. It's hard to remember what it was even like before.

Sometimes I sit and daydream about what our life would be like had Matthew been born "typical". What would it be like to have an active, busy 2 year old around the house? Talking and walking and getting into everything, annoying his brothers and sister. Just typing that makes me a bit teary. I see other boys that about Matthews age running around and wonder if their parents truly appreciate the normalcy that they have.

But our lives have also changed for good. Matthew has given us a perspective we would have never gotten otherwise. To appreciate each day. To be in awe at the kindness of strangers. To be in even more awe at the support from friends. To be brought to tears because of the depth of love from our families.

I've made so many friendships had it not been for Matthew. Friendships I cherish. I belong to a new club. One I didn't exactly ask to join. One most of my friends that have always known me don't understand and can't join. But that's okay.

Matthew has so much joy and has taught me so much. Would I change it? Yes and no. I would not change the life lessons I have learned. I would not change the fact that Matthew is here. I would only wish to change the pain and struggles Matthew has gone through.

I am not the same person I was 2 1/2 years ago. I hope I am a better person because of Matthew. I know I am stronger.

And if Matthew can go through all he goes through, and still have the sweetest personality and a big smile on his face; then who am I to complain?? He is content...and is teaching me the same.

Unwelcome company

2010-07-07T23:37:00.004-05:00

Update: Thanks to my friend Cindy, and fellow blogger friend Jennifer, for identifying this bug as a "house centipede". Still makes me shiver to look at the picture. The information Cindy sent me via email says that these are harmless little creatures that like to live in dark, wet areas; hence the reason he was in my laundry room. We've been getting a ton of rain her lately, so maybe that is why I got to meet one of them. They also eat spiders. Okay enough talk...I can't even think about them without doing a full body shiver.

{disclaimer....anyone who reads my blog that does not want to see insect pictures may want to skip over today's post}

So... the other night I was cleaning out some paint brushes late at night after painting our basement. I was pretty sure I saw something out of the corner of my eye crawling down the wall. I looked over and sure enough, it was the GROSSEST bug I had ever seen. Now, I'm not scared of bugs; but I don't necessarily seek them out either. I don't normally freak out about them, just keep my distance. After shuddering a couple times looking at it, I got out my camera. I had never ever seen a bug like this. [Side note: Last night I quickly learned how to use my camera in a dimly lit area, and get a good close up shot, without actually getting close. Believe me, I would've never gotten as close as these pictures seem.]

Now...I don't know what this thing is; and neither does Steve. Do any of you?? Anybody good at bug identification?

Blech..that's all I gotta say. The worst part of it is after I came back to the laundry room after showing Steve the picture......the bug was GONE. He is still loose. That.gives.me.the.shivers.

So anyone, anyone??? Anyone know what this thing is?
(pay no attention to the poor paint job and the dust in the back corner of my laundry room)

Tell me the duck story

2010-07-05T07:00:00.002-05:00

My kids were introduced to the "Duck song". It's a super cute, catchy little song for kids on Youtube. and it might be from someplace else too, but that's where my kids heard it first and they run around the house singing it all the time now.

Mason, my little artist, drew this cute picture the other day. Look in the grass for the duck. For 6 years old, I was SUPER impressed with his drawing. He tells me that that is HIS lemonade stand in the backround.

{you can click the picture to enlarge it if you would like}

And to fully understand the picture; you much watch the Youtube video of the duck song:

Home Tour: Day 4

2010-07-01T07:00:00.001-05:00

The Master bedroom, the master bath and the laundry room

I really like our bedroom. It's nice and spacious, it has a regular closet and also a walk in closet. There is a 3/4 Master bath also in the room.

We will be repainting this room and re-carpeting this room soon. The carpet in this room, we're pretty sure, is original and pretty stained. The window covering are also going to replaced. This room will then be ready to go. (The dresser on the left has a matching mirror for the right side, but it is broke and needs replacing.)

Another view of the bedroom, taken outside the master bath

It was hard to get a picture of the master bath cuz it's little. On the other side of the shower (if you busted that wall out) is my walk in closet that will someday be sacrificed to enlarge the master bath and make the shower handicap accessible. For now we will be ripping out the carpet (again...who puts carpet in bathrooms...and when was the last time you vacuumed your bathroom??? I prefer to scrub my bathroom floors thankyouverymuch), the countertop and sink, and the toilet. The lighting is funny, but the toilet is a blue color and matches the sink and walk in shower. Funny trends that were popular 30 years ago.

And finally the laundry room. This room doesn't seem to fit in the flow of the pictures I been putting up, but it's the last room upstairs to show. This room is off the garage (right when you walk in the house, sort of like a mud room) and right behind the kitchen.

I almost re-took the picture because it's a bit messy, but then I decided to leave it as is. This is what my laundry room looks like most day's anyway.
Behind those spindles is a toilet, and opposite it (behind the dryer) is a utility sink. The room does close off with a pocket door for privacy. I personally like the toilet in here, especially when the kids are running in from outside.
And I love the utility sink for soaking things.
There is a cabinet to the right of the washer that holds my cleaning supplies and such. I love having this laundry room. I don't plan on doing a thing to it. It's a LAUNDRY ROOM. My last laundry room wasn't even finished. I'm just happy it's on the main floor and it has some space to it. Ah...the simple pleasures in life :)

Up tomorrow:

The basement including the big kids' rooms

Home Tour: Day 3

2010-06-30T07:00:00.001-05:00

Matthew's room, the spare room and the main bathroom

Before the move, all three boys shared one room. The new house has a total of 6 bedrooms, three up and three in the basement. It is so nice for each of them to have their own room!

Of all the rooms, Matthew's is the smallest, but it is also in a strategic area (more on that later). We bought him a "big boy" bed for his new room. A great craigslist find. I follow a blog of a little girl that has special needs and her mom bought her this exact bed from IKEA, because it had three solid sides, and her little girl then could not roll out of bed with the side rail attached. I had put the idea in the back of my head for when he outgrew his crib. But when I saw it on Craigslist 1 week later with a matching dressor for only $100, I couldn't pass it up! Even though we could've gotten more time out of his crib, we decided to move him up now. The drawers underneith are great for storage, and it also pulls out to make a trundle bed. I think this will be nice for when Matthew may not be feeling well, and I want to be close, but not actually in bed with him.
The built in storage to the right is great for his books, and I have all of his medical supplies stored below in the cabinet. It's so nice to hide it, and make his room look like a typical boys room and not a sterile medical room.

A view from the other end of the room. We are planning on painting his room (tonight in fact!) a real pretty green and then hanging some vinyl wall decals I found on etsy.com of monkeys in a tree. I've found some other really cute monkey themed things for his room, so he will have a cute monkey room. I will post after pictures, hopefully next week. We also plan on hanging brown tab curtains, to match his soft brown comforter.

Oh and on the the strategic placement of the room. If that bookcase were taken out of the room, you could walk right in the master bathroom. We plan on (down the road) expanding our master bathroom a bit and making our shower a roll in shower for Matthew. We will most likely at that point take out the bookcase and make this a door in which to easily get Matthew into the shower. This is in our 5-10 year plan. We don't need this now, but as Matthew gets bigger, we do foresee needing something like this.

This is the spare bedroom. There is not much in here right now. I am planning on this being my sewing room and also a guest bedroom. I will put in a desk and a nice bed for so we can have a nice place for company.
Also the carpet will be replaced. It is a pretty peach color. (Yick) I believe it's original to the home (circa 1980)

Sandwiched between the two bedrooms is the hall bathroom.

Ah, the hall bathroom. What can I say. Who puts carpet in the bathroom???? That carpet's days are numbered. It's heading out soon along with the spare bedroom carpet. Steve will probably lay a nice linoleum in here that looks like tile. We put it in our old home, and really liked it. We will also replace the green toilet, the green sink, the countertop and the funky light fixture (that you can't see. It's pretty interesting. It starts in the wall, has two chains that come out of it, are hooked in the ceiling and then hang down to the mirror. I'm guessing another 1980's dream). We are leaving the green (sage colored) tub for now. I found a shower curtain to complement it, and this room will also get a fresh coat of paint. I'll change the drawer pulls and the towel racks. The kids shower in here, so I'll probably just put in hooks. That works well for the kids towels, they haven't mastered folding them back up anyway :)

Up Tomorrow:

The Master bedroom, the Master bathroom, and the laundry room

Home Tour: Day 2

2010-06-29T07:00:00.000-05:00

Kitchen, informal dining room, and 2nd living room

The kitchen will be one of the rooms that will need a solid dose of "makeover" when it's turn comes up.

For some reason, the people who lived here before took out (and put in storage in the basement) a floor to ceiling cabinet that housed a wall oven, and in it's place put a OLD, I mean OLD gas range with microwave in it's place. I believe it was probably the first microwave EVER made. It's attached to the range and it's U.G.L.Y. We will be bringing that floor to ceiling cabinet out of storage, putting in a new wall oven (because no one needs both a cook top and and a range) and also putting a microwave above it. The ancient stove/microwave that is in it's place will be retired. A portion of this beautiful beast can be seen in the left of the above picture.
We also plan on replacing the faux butcher block countertops, the sink and the cooktop. We'll put in a new ceiling and andalso replace the hardware on the cabinets.

Above is a picture of the cabinet (downstairs currently) that we'll bring upstairs and put the new oven and microwave in.

This kitchen has a TON of cabinets which I love. They extend way over into the informal dining and there is also a pantry next to the fridge. The countertop between the dining and living room extends out so you can put bar stools under it for a breakfast bar. Perfect for the kiddos in the morning.

The informal dining room. Small and sweet. The light fixture and curtains will be replaced with this part of the makeover.

And this is the 2nd living room. We are currently hunting for a sectional to put in here. The recliner is just hanging out here, because we haven't found a good home for it yet. It's Matthew's favorite lounging spot too. Nothing planned for this room, other than fresh paint...but that'll be a while. The door in the center left goes back to 2 of the bedrooms (Matthew's and the spare room) and there is also a bathroom, and a very large hall closet back there. The whole house has 6 panel solid oak doors (which I love!) and you can see part of the hall closet from the above picture.
Another view of the 2nd living room. The door to the left of the fireplace is the master bedroom, and the door to the right goes out to a sun room. To the right of the door is the informal dining room.

Up Tomorrow:

Matthew's room, the spare bedroom, and the main bathroom

Home tour: Day 1

2010-06-28T07:00:00.002-05:00

What a busy 2 weeks we've had. I had all intentions of getting the picture tour going earlier; but alas, here we are two weeks later.

We love our new house!! It has a ton of room compared to our old home. Our old home was a multi-level (some call it tri-level) with about 1200 sq. ft. upstairs and 500 in the basement. Our new home is a ranch with 1750 sq. ft upstairs and the same in the basement. We've doubled our living space and OH is it nice! I tell people that the new house just needs a "makeover". The space is wonderful, but some parts of the house are still stuck in the early '80's. But for the money we spent and the space we got, we couldn't beat it. The "makeover" can come as we live here.

I intend on posting different parts of the house each day this week along with telling you our plans for each room.

Hope you enjoy!

Here is the front of the house. The garage is on the side of the house. There are a lot of established trees in the yard, and the grass looks pretty good. We plan on eventually getting some mulch under the pine trees (no grass grows there) and sprucing up the landscaping. I have some fun ideas. I'm guessing the mulch will happen in the late summer/early fall and my other landscaping endeavors will have to wait till next spring.

This is the front entry. Nothing special, but also not much we plan to do with it. Probably remove the curtains on the door and eventually put a prettier door in, but that is very low on my list of things to do. The spindles to the left are, however, higher on the list of things to do. I will be removing them when I redo the formal dining,which is just to the left of the picture. I am NOT a fan of spindles. I'm not sure if we'll completely open that room up or just leave the half wall. I'm guessing just leave it as a half wall.

Here is the formal dining room. As you can see, no table yet. We are working on it. This home has an informal and a formal dining room, so we put our only table in the informal dining room and are looking for just the right table to go in this room. Until then, it makes a great place to house Matthew's stander and indoor base for his wheelchair.
The only section of wallpaper in this house in on that one wall in the dining room. When I redo this room, it will be gone. Some new curtains in this room and the new table will suit this room well.

This is the built in hutch in the formal dining room. I love it, although I don't have any fancy dishes to put in it, maybe someday :)
The door opening behind the formal dining room goes into the kitchen if you go straight, to the garage and laundry room if you go right or down the stairs to the basement if you turn an immediate left.

If you take yourself back to the entry way and look right, you will find yourself in one of the two living rooms that are upstairs. This is the room we have our only couches in right now and the one we will watch TV in. I haven't fallen in love with the diamond wooden shapes in the windows, but I haven't had time to remove them.
Other than a coat of paint and some different window coverings, there is nothing we will do to this room for a long time.

Another angle of this living room. Note the popcorn ceiling and a tray ceiling at that. Not a big fan of popcorn ceilings, but the people in the '80's loved them.

This is taken from standing at the bay window. The door leaning up against the wall (on the right) belongs to the door to the basement (haven't gotten that rehung yet) To the right in this picture is the entryway, to the left is 2 of the bedrooms and bathroom and right behind the wall that has the armoire is the other living room. We have visions of one day removing that wall and making the two living areas into one and laying wood floors throughout. This would make for a nice open floor plan and also for easier access for Matthew, but for right now, we are very happy with the layout. All of the main doorways are nice and wide and easily fit his chair through.

Tomorrow:

The kitchen, informal dining room and 2nd living area.

Goodbye....

2010-06-10T08:00:00.001-05:00

We have decided to take the summer off of all additional therapies except for our EI therapy. We stopped OT and speech right before Matthew's surgery. We got to see our PT, Kilee, one more time this week. And she is taking a new position at her job next week and so we won't be able to see her in the fall.

Matthew LOVES Kilee. I have never seen Matthew work as hard as he does for Kilee. She definitely has a way with him. She has the sweetest voice and is slow and gentle in her movements with him. Because of Matthew's lack of good vision, abrupt movements or loud voices really scare him. And with all of his negative experiences with illness, any time he is taken out of the home, or hears a new voice he immediately checks out. He closes his eyes and "plays opossum." Kilee could easily pull him out of his shell.

Well, yesterday we had to say goodbye to Kilee. We were both sad. And that boy has his momma in him, because he wanted NOTHING to do with it. When change that I don't particularly like comes to me, I dig my heels in, protest and do my best to avoid the change. Matthew followed in suit today. He insisted on sleeping through therapy, throwing a FIT when we tried to do anything with him; almost as if he slept through it, maybe it wouldn't really happen. At the end of the session, I gave him to Kilee for a hug and he nestled in right on her shoulder. I think he would've stayed there forever too, if we would have let him.

We'll miss Kilee, alot. We're hoping to keep in contact with her though, and maybe even hit her up for a coffee shop date.

Good luck with your new job Kilee!

One week from today...

2010-06-04T07:00:00.000-05:00

This will be our new home!!

We have a lot of work to do as it needs ALOT of updating, but we will have SO much more room and Matthew's wheelchair moves very nicely throughout it. SO much better than our current multi-level home.

Back in the saddle Stander again

2010-06-03T07:00:00.001-05:00

This week Matthew has been feeling well enought that we were able to put him back in his stander. Yesterday, he was not quite as happy about it and only lasted 10-15 minutes, but tonight was much better and we got lots of smiles!

He loves this little switch toy and was playing with it so nicely tonight

I've been on the hunt lately for cute shoes that will go over Matthew's AFO's. Let me tell you, there are not many choices for special shoes that go over AFO's and they are down right UGLY; and you have to buy "normal" shoes 2 sizes big to get them over AFO's and they look big and clumpy, and the ones we've found we still have to fight to get them on and tied. So I had a date with Google, and searched "cute shoes for AFO's" and found one message board out there in cyber land that a poster mentioned "Etnies" worked for her child. Now I'd never heard of them before, so I googled them and they are basically what I call "skater shoes". But they are also cute, darn cute. They make little infant sizes too. So I ordered a pair, one size bigger than his normal shoe. They came this week, and let me tell you they are a BREEZE to put on. They literally slip on. And they are "normal" shoes. NOT special shoes. I'm hooked. They weren't even expensive. This pair below was on sale on their website and I paid 20 bucks for them. I will be buying these from now on. No more ugly shoes. No more Sketchers (that is what the AFO rep gives us) that I have to fight to put on. Just cuteness!

Oh and P.S. if you decide to buy a pair...use the code "Saveetnies" and you'll get an extra 15% off :)---I'm not recieving anything from this...just wanted you all to know about a great deal!

Home

2010-05-24T22:52:00.002-05:00

Sorry to not update for a bit, but we are home. It has been a fairly painful recovery for Matthew and I have spent a lot of time cuddling him in the last few days. I was unable to hold him all day Friday, and most of the day Saturday. We kept him pretty much sleeping for those two days. Saturday afternoon they took his catheter out after he urinated around the tubing. I couldn't believe my eyes. I went to turn him from one side to the other and his whole diaper and bedding was wet. So they figured they could take it out. He's been on his own ever since. No more catheterizing him. The doctor told us it could take up to 3 or 4 months for it to come back and it came back immediately. That is a direct answer to prayer. I pleaded with God to allow him to be able to pee again. I couldn't stand doing that any more. It was too much for my momma heart to take.

Saturday night, as he started waking up more, we noticed a big increase in the amount of mucous he had. Given the fact we'd kept him down for 2 days, his lungs had a nice build up of junk to get rid of. A couple times respiratory therapy had to come up and deep suction him to help clear his lungs. That seemed to help, and they allowed us to go home on Sunday. When we got home, it became evident that he still needed some help with suctioning as he was unable to get his lungs clear on his own. I called the doctor to see if we could get a home suction machine, but they wanted us to go back to the ER to be suctioned and then send us home with a suction machine.

When we got to the ER, they called the pediatrician, and he wanted us to spend the night (grr...) and then get us a machine in the morning and we could go home. So we hunkered down for the night, and bright and early, they got started on getting us the equipment we needed. We left early morning and the minute we got home, Matthew and I snuggled into the recliner for three more hours of sleep.

Matthew has been in pretty good spirits today, but you can tell he still has quite a bit of pain. We are liberally giving him pain medicine and trying to keep him comfortable. He has been sleeping a lot, too, which is to be expected.

I already feel the surgery was worth it, even if the only benefit we see is his ability to empty his bladder on his own. The pain in his legs should also lesson as his nerves in his back continue to heal.

Out of Surgery....

2010-05-20T23:17:00.002-05:00

Matthew's surgery was a success. His white count was normal today, which is unheard of from him (this one is a miracle in itself...Matthew white count is NEVER normal...praising Jesus for this one) and so surgery went on as scheduled at 5pm. When we arrived at 3pm for surgery, he had just woken up from a nap. We got checked in and as soon as we were able to sit and relax, Matthew started smiling. And while he was in the pre-op area, he had two wet diapers (which he hasn't been able to do for almost a week). He was making a liar out of us :) He looked great this afternoon, but we knew the surgery still needed to be done.

He left preop right at 5pm and around 6:45 Dr. Puccioni came out and told us surgery was successful and that the philum (this is the end of the spinal cord that is tethered or adhered to the bottom of the spine) was very thick and VERY tight. He had a hard time getting his instrument even underneath it to cut the tethering. So definitely the surgery was needed. Because the philum was so thick, this could make his recovery a little more painful, but luckily our doctor believes in giving lots of medicine to keep his patients as comfortable as possible.

We got to see our little man again around 8:15 and he has been sleeping soundly ever since. I guess he was pretty sleepy in recovery, but when we met him up in the room I started talking to him and even though he kept his eyes closed, he smiled at me three times. It was nice to see.

Matthew needs to be on bed rest for the next few days, and not held at all, unless absolutely necessary. They want him to lay on his side and they will turn him every four hours from one side to the other.

We may not know for up to 3-4 months what damage to the nerves from the tethering will be permanent and what he will regain. We are mainly hoping for him to be able to empty his bladder on his own, and to not have leg pain. Anything else that comes from this will be an absolute added blessing.

Okay, off to bed..I better sleep while he is.

Happy Birthday Matthew and surgery plans

2010-05-20T09:12:00.002-05:00

Matthew is two today!! Happy Birthday sweetest boy! We love you!

And surgery is scheduled today for 5 pm. His white count was elevated on Tuesday (which can indicate infection) and if it is still elevated they will consider canceling surgery. This would be devestating as Matthew continues to be in alot of pain through out the day. He has no signs of infection throughout his body and has had elevated white counts in the past for no particular reason. We are specifically praying for a lower white count and a safe surgery. If all goes well, we should be in the hospital through the weekend. I will be updating facebook regularly and my blog most likely late tonight.

Thank you to everyone for your continued support.