It's been awhile

 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

 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

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...

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

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...

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

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

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!!

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

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

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

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.

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.  

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Another Blog

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.

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

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 !!

{More pictures to follow Monday!}

Matthew's new hang out

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!!

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

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

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!

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

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

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

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

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

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.

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

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

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

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

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!

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

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

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

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

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

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.