Merry Christmas!!

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...

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

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:

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

Back to square one

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!!

I will try to update later this evening!

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

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!

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...

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

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

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

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

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

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

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!

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

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

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

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

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?????????..................................

told my baby.....

It was okay to grow up and look like a


Toddler??

What's new in Matthew's world

• 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...

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....

....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 :)