Mason turns 6!

This cute little guy of mine turned 6 today!!

We had respite care today, so we decided to take all of the older kids to the new chipmunks movie. It was really cute! Then we headed off to a little Chinese restaurant nearby for supper. Our kids love Chinese food (well, at least the American version of it)

Micah and Megan enjoying their Chinese. It is VERY cold in our neck of the woods, and I don't think they could keep this little shop warm. They decided to eat with their coats on!

Mason with Uncle Curt who joined us for our Chinese supper and present opening


Mason's cake he picked today

Very pleased with the fact he blew out all the candles in the first try!


Cool game sent to Mason from Grandma and Grandpa

A star wars frog habitat. He'll send away for his tadpole and get to watch it transform into a frog.

Daddy and Matthew checking out Mason's presents

Mason's dart shooter. He had a ton of fun with this tonight!

Update on Steve

Steve got out his heart cath at around 11 am. We have great news!! Steve has no blockage in his arteries. He got a clean bill of health. Steve has had pericarditis after a viral infection in the past(about three years ago, I think). This puts him at increased risk for this again. And Christmas Eve, he told me that his chest pain felt the same as it did before when he previously had pericarditis. But in the ER, when they drew blood, his cardiac enzymes were elevated; just barely elevated. Cardiac enzymes are a indicator of cadiac muscle damage. They were concerned because of his family history or heart problems that it would be good to investigate further. So, hence the reason for the heart cath.

When the doctor came and talked to us after the procedure he said his arteries were perfect, but that there was a little inflammation of the heart muscle (myocarditis). This is essentially the same as pericarditis, but with further involvement. And when you have myocarditis, you will "leak enzymes" in the blood. So hence the reason for the increased cardiac enzymes. His ejection fraction of his heart (that tells the strength of the hearts ability to pump blood) was minimally decreased but the doctor said that was due to the infection and when he has a checkup in a couple months, it will most likely be back to normal. Steve will go home today with a anti-inflammatory to take for 3 weeks. The hardest part for Steve will be the fact that he cannot lift more than 10 pounds for 5 days; which puts him out of work for 5 days. He is NOT happy about that. It takes a lot to make Steve sit still. But the fear of his artery opening back up and excessive bleeding from lifting too much weight scares him enough that he'll sit (or at least not lift more than 10 pounds) for 5 days. Maybe it will a blessing in disquise. This gives us 5 days as a family together.

Merry Christmas!!

From the Soldatke Family

*on a side(but very important) note: Steve could use our prayers today. He has been sick with a kidney infection for a couple of days; but very early Christmas morning (around 12:30) started having chest pain and had to go to the ER. Stubborn guy drove himself, because he didn't want to take the kids out in the gigantic blizzard we are having here. He is hospitalized and they will be doing a heart cath tomorrow morning. He is very young to already be having heart problems (35) but has a strong family history, so they are being extra cautious. I, for now, am stranded at home with the kids. It is still too dangerous in my opinion to be out and about. I don't have a 4 wheel drive and don't want to endanger anyone else to come get us at this point. I'm hoping the snow quits, so we can go up and see him. Please pray that the results will be negative. We are putting our faith in God and knowing that HE will take care of us.

Prayer request

UPDATE:

I recieved an email from Kristen this morning. They are home, and are resting. The doctors believe it was just a febrile seizure, though they did not find a reason for it. Thank you for your prayers. I'm sure Kristen will update her blog when she is able.
______________________________________
I recieved a text message late tonight from my dear friend Kristen. You may remember she is the friend of mine who updated my blog while we were in the hospital. She texted me to let me know that her precious Cayman is in the ER after having a very long seizure. It sounds as if she also has a high fever, and I don't think they have any answers yet. Would you join me in prayer for this sweet little girl and her family who are so dear to my heart? I would appreciate it!

Matthew's new chair

Matthew got his new adaptive stroller. He loves it. See: Excuse the mismatched clothes. We are hanging out at home. He doesn't care anyway.

The seat can be taken off the stroller base and put on the spring base. This is what his seat is on in the pictures. It's like a very fancy (read: expensive) office chair base. It goes all the way down like this picture below to act more like a floor sitter. Matthew can look out the window.


or it can be elevated all the way up to act like a highchair. We use it in the kitchen while I'm cooking and we're eating.

I don't have a picture of him on the stroller base. We're leaving that out in the car, and it's too cold to get it out. The stroller has a shade and even a rain poncho. It sits rear facing or forward facing. It's SOOOOO nice!! As my pediatrician said; "It's the cadillac of strollers." We love it!! Special thanks to our wonderful PT, Chrissy for suggesting this stroller and writing the pages and pages of justification to the insurance company.

Winter Wonderland

Since Sunday, the snow has been steadily falling in our neck of the woods. I think we have gotten around 15 inches total. Crazyness. Last night and today the roads were nearly impossible to navigate with out 4 wheeldrive. I tried to take some pictures of the snow last night; but this is all I could get:

With the flash, all I could get was white snow flecks and without the flash, the house was just a blur

Steve pushes snow as a 2nd job, and this is the only picture I could get of him doing our driveway. Being the farm girl that I am, he even let me run this for a while last night. It was a lot of fun.

Due to this 2nd job, I have not seen Steve hardly at all since Sunday. He puts in some long hours. He pushed snow all evening and all night Sunday and Monday morning. He slept Monday afternoon and evening and then went out early Tuesday again and was out until last night around 6. He slept till midnight and went back out and as of right now (5:30) he is still out pushing. I have to work tonight, so Steve will come home to watch the kids and then go back out when I get home to finish up. He will be one tired guy come tomorrow.

Here is a couple of pictures from today out our front and back windows

We are home!!

We are home!! Safe and sound!! I have alot of unpacking to do; but wanted you all to know that we are under our own roof tonight. Thank you for praying us through this storm!

The Carrier Pigeon's Update

Hi, it's Kristen. Without an update from Jill yesterday I began to worry that maybe Matthew had a set back and Jill felt too discouraged to write about it. OR maybe things are still looking good and Jill is just too busy getting ready to go home.

To end my whirlwind of worries, I decided to stop wondering and just give Jill a call to find out how things are.

Well, the news is, it's good and plans for Matthew's discharge tomorrow are still in effect!!

Hooray!!

Tomorrow will be day 38 in the hospital for them! That is a really long time and it's no wonder that Jill's mind has already taken Matthew, hopped on that plane, and are resting back home. She is so ready to be there!

Please keep asking God to see these plans through.

Day 35

It's me, Kristen, posting...

Words from Jill:

Crazy...35 days in the hospital. I was going to update the blog last night, but Matthew was up coughing....and awake...all night! I did not get any sleep. So the blog has waited till today. Matthew's awake episode was caused mainly from coughing. He has so much junk in his lungs to cough up that it keeps him awake. So today we're going to work on coughing and getting rid of it. As soon as I would lay him down, he would cough till he vomited. LONG NIGHT.

Today Dr. D saw Matthew and said it was a world of difference from the last time he saw him. Our goal for today is to increase his feeding time during the day and give his tummy a rest at night. And the other thing we talked about...dismissal!! We are coming home! Thursday is the day. He thinks he'd be ready Wednesday, but since we have to buy a plane ticket, He wants another day just in case something happens. I can't wait to be home!!! Soon we are going home!

Matthew is coughing again, sorry this will have to be short and sweet. I will update tomorrow.

Black Friday

No, I didn't go shopping either :) And yes this is me, Jill, updating my own blog. And No, we are not out of the hospital. Well, not technically. I am staying with the rest of my family (sans Matthew) in our room across from the hospital. They have internet access here that is different from the hospitals, but even slower. However, it does allow me access to my blog; so I thought I'd update it myself for a change.



Today was fairly uneventful. With all the H1N1 stuff, we had to get special permission for the kids to come up to Matthew's room. They did give us special permission, but they can only come for 1 hour a day. So we have been doing some fancy work to keep us together, but also be with Matthew as much as possible. I went up with him this morning and Steve and the kids joined us around 10:30 for a rousing game of the hospital's bingo (in which Matthew won one game and Megan won twice) and then we took off for lunch. After lunch, Steve went to spend the afternoon with Matthew and I took the older kiddos out and we walked to the Science Museum. We spent the whole afternoon there, which was pretty fun. We came home for supper and then I went and spent the last few hours of the evening with Matthew and put him to sleep. He is resting quietly, so I walked back to our apartment, and we will do it all over again tomorrow.



Matthew has been on and off oxygen all day. They are doing breathing treatments and percussion treatments to his chest (to loosen up "junk" in his lungs). Seizure wise we are only seeing what we call "simple partial" seizures. Simple means that he is still alert and oriented and partial meaning one-side of his body. This type of seizure is not as worriesome and so we are trying to get rid of with the ketogenic diet. So far Matthew is not spilling ketones in his urine, so they upped his ratio. The ketogenic diet can be figured at a number of different fat to protein ratios. Tuesday they started him on a 2:1 ratio and today they upped it to 2.5:1 ratio. They can go up to 4:1. And spilling ketones will take time. Time for his body to use up all the carbohydrate stores and start burning the fats for energy.



We had hoped that there would be a possibility that we would go home as a family on Sunday; but his respiratory issues may hold us back. That and the fact that he is not spilling ketones yet. We are READY to go home, and the fact that my family is here and may very well have to leave without us will be harder than I realized. If I had to guess, we should be ready to go home by mid week. Time will tell!

Quick Update

It's Kristen, bringing you...

Words from Jill:

Sorry for the quick update, but my kids are going to be here in 1/2 hour, and I'm gonna spend time with them when they get here.

Matthew had a great night, other than the fact he didn't sleep till 2 am. We slept in today and Dr. F okayed to start the ketogenic diet. At noon today it started. We have not seen any changes; but don't expect to.

A lot of the nurses and respiratory therapists that haven't seen him in awhile can't believe the changes in Matthew. I don't always notice changes since I'm here everyday.

I think, he may be seeing the light at the end of the tunnel. We keep hearing rumblings of "discharge planning". I won't get excited until we get outside the doors!!

Happy Thanksgiving to everyone!! We will be spending it together as a family! I may not update tomorrow, but not to worry, I'll be back soon!

5th Tuesday in the Hospital

Hi, Kristen here, bringing you...

Words from Jill:

This is our 5th Tuesday in the hospital!! Our 29th day. Amazing! While part of me feels like it was yesterday, a lot of me feels like this has been forever!

Last night was a rough one for Matthew. He hasn't been sleeping very much. One of the medication's side effects is insomnia. At 2am, he finally quieted and slept. His O2 stat's dropped to the low 80's. As the nurses came in, I opened his eyelids, and his pupils were pinpoint. When it is dark (like when your eyes are closed) your pupils should be bigger and should react to light. His were so small, they only were able to react a little bit. That scared the nurse, and she tried to wake Matthew up. He was virtually unresponsive. He would only flinch when you rubbed your knuckles across his chest. He didn't even wake up. He was this way for 30 minutes. They called the doctor and he didn't want to load him, but just watch him. It was scary, because while he wasn't looking like he was having a seizure, they thought he was having a seizure. At around 25 minutes, I heard his breathing deepen, and I turned the light on, and said "Hi, Matthew!!", and he opened his eyes and smiled at me! Unbelievable! Scary for me, and the nurses, too! He did this two more times through out the night, so it wasn't a very restful night.

This morning the doctor, nurses and dietitian made a last minute decision that they wanted Matthew a little more healthy than where he is right now before they start the diet. While I was disappointed, I understood. They just want Matthew to succeed. We still did all the teaching today, and I learned a ton! I have a lot of information to process; but we are ready to go when Matthew shows us he is ready.

This afternoon, Dr. F decided it was best to hook Matthew back up to EEG for a bit to see if we can catch these 'episodes' where Matthew was unresponsive. Right on cue, as soon as the leads were hooked up, he did it. FOR 35 MINUTES. We had 4 nurses, the floor manager and the PA in the room. Everyone was bustling around his little crib, trying to wake him up. They called the doctor and he watched the EEG. He said, get this.....it WASN'T a seizure!! He thinks he is getting so little sleep, that when he is asleep he just goes into a very deep sleep, and since he still has some residual pneumonia that that is why his sats drop a little bit. I was so thankful. I was wondering how I was going to know if he is having a seizure in the middle of the night when I'm asleep. So GLAD for so many reasons!! So good deal, we just have to get this pneumonia under control a bit more and then we are go for takeoff (of the keto diet!)

Seizure wise he is having only "simple partial seizures" now. Simple means he is still alert and partial meaning one-sided. Dr. Frost doesn't want to increase his medications for these. He is the most coherent we've seen him. It's nice to see a bit of my baby coming back. Tonight I think I can say, that we may be on the upswing of things. Praise Jesus!!

**************************

Please pray for Thomas' family tonight. I've told you about them in the past, we met his family in the PICU. He went to sleep in Jesus this afternoon. Pray for this grieving family. Also, I just found out that a classmate of mine from highschool (PVA...I went there my junior year) lost his wife today from a sudden heart problem. I also went to school with her, and she has three small children. Pray for this sweet family too! There are so many hurting!!

Day 28

It's Kristen here, sending you...

Words from Jill:

This morning bright and early we moved up to the epilespy unit. All the nurses welcomed Matthew and told us how happy they were to see us again. No new med changes were made, but his IV's were all unhooked (the line will stay in, and it is flushed with heparing to keep it patent). Without the 3 lead heart monitor, the pulse monitor, the oxygen tubing and the IV tubing, I was able to cuddle my baby for the first time in 28 days. Sure, I've held him, but not comfortably. We walked around the unit, rode in the stroller and got plenty of snuggle time. We had the dietician come in today, and tomorrow is the big day. Tomorrow we start the ketogenic diet!! I am so ready! All his meals will come from dietary and be measured precisely. I will go to education classes tomorrow for 5 hours to learn the ins and outs of this diet. This is a very precise diet, and I have a lot of learning to do. This diet requires strict following; and will even be restrictive to what lotions, toothpastes and baby wipes we use. I will be able to post more tomorrow about what I learn. Here's hoping to a restful night.

I'm Tagged

Hi, it's Kristen. What's that? You already knew that? Well, just you wait...one of these days it will be Jill herself, then you'll really be surprised and glad too, because that will mean, Matthew is home!!! "We're praying and rootin' for you Matthew! Keep up the good work, little buddy!"

I tagged Jill in a recent post of mine. And how funny that is because it means I get to post it for her!! Yay! It's like playing tag with yourself, almost. Haha.

Oh, oops, I almost forgot, this isn't my blog...hehehe. Jill, I will stop all my silly nonsense right now, post your words, and then get to bed.

I promise I will stop using your blog as a source for purging all my silly ramblings.

I promise I will stop using your blog as a source for purging all my silly ramblings.

I promise I will stop using your blog as a source for purging all my silly ramblings.

Ok, I stopped now. :)

Words from Jill:

Kristen, my good friend who's been updating my blog for me, recently tagged me as an authentic mommy. I am supposed to tell what makes me an authentic mom. While I never think of myself as such, I'm just doin' what i do because I love my kids. Today I recieved an email from my uncle-in-law (is that a word?) and I loved it. To me, it describes what a true mom is. I'm not one of "those moms", you know, the mom who has it all together with a neat house, well groomed kids, nails done, and make-up on. Far from it! I'm lucky to get a shower and shave my legs in the same day!!

I've changed the words slightly, and here is what i believe to be an authentic mom:

Authentic Mothers don't eat quiche;
They don't have time to make it.

Authentic Mothers know that their kitchen utensils
are probably in the sandbox.

Authentic Mothers often have sticky floors,
Filthy ovens and happy kids.

Authentic Mothers know that dried play dough
Doesn't come out of carpets.

Authentic Mothers don't want to know what
The vacuum just sucked up.

Authentic Mothers sometimes ask 'Why me?'
And get their answer when a little
Voice says, 'Because I love you best.'

Authentic Mothers know that a child's growth
Is not measured by height or years or grade...
It is marked by the progression of Mommy to Mom to Mother...

My turn to tag: I tag Sherri

, Beth

, Diane

, Michelle

, Carla

and my own mother (even though she doesn't have a blog; she is an authentic mom!!)

Relaxing Sunday

Hi, it's Kristen again. I was only seconds away from shutting down my computer when I saw another email coming through...and it was none other than our faithful Jill. "Great timing Jill!"

Words from Jill:

Today was indeed, a quiet restful one. I slept most of the morning due to a headache that I couldn't shake. Matthew was not moved today, although he could have been; the neurologist on call is not a pediatric neurologist; so the bare minimum is done, which includes as few decisions as possible. They are holding our room upstairs and we will move as soon as the peds neurologist comes and sees us in the morning. This evening, I was able to go out for supper again. I met friends of my friend Carrie, and they took me out for some yummy indian food. We had a wonderful visit, and it's refreshing to get out of the hospital. They sent me with a nice care package and their well wishes (Thanks Tom and Mary!). We're looking forward to another weekend of small, positive steps in the right direction!

Quiet Day (Yesterday's Update)

Hi, it's Kristen. Jill and I have something greatly in common and that is our nocturnal habits. But Jill out lasted me yesterday. I went to bed before I received her update. So this post is about their yesterday's report.

Words from Jill:

Today was nice and quiet. I'm just getting to an update (sorry, you'll probably see this tomorrow morning). The on-call neurologist is just going with the plans of the neurologist from the week. The nurses, in fact, are turning off the versed as I type this. That is the medication that is keeping him in the PICU. So possibly tomorrow, we may move up to the epilepsy floor. The reason I am happy about that is it means we are one step closer to going home. We still have a long way to go, but I'll celebrate it one tiny step at a time. His pneumonia seems to be clearing, and that should help too, because seizures are worse when kids are sick.

My uncle Dave and Aunt Cindy live in the cities, and my aunt Denise and uncle Terry came up from South Dakota for the weekend for a Vikings game; so they both decided to take me away from the hospital and get some supper. YUMMY!! 26 days of hospital food with very little outside food makes one very happy to get out!! We had the most yummy food and great conversation. We ate at a quaint little 1930's style diner. It was a lot of fun! Plus they came bearing gifts. My mom sent me more clothes, and some gifts (Thanks mom and dad!!), my aunt and uncle brought me more jammies and some nice pampering things (love them all, thank you!) and my grandma made me puppy chow!! (Thanks grandma!!...I love it, you're the best!). I had the best time!

We're looking forward to a relaxing rest of our weekend!

Matthew's 18 Month Birthday

Hi, it's Kristen. As I was composing this post for Jill, I noticed it is her 200th post. It seems extra monumental since it falls on Matthew's 18th month birthday.

Words from Jill:

Happy 18 month birthday to our sweet little Matthew!! I cannot believe it. And I never would've expected that we would be spending his half birthday in the hospital.

Today he has had another positive day. They have weaned his versed drip from 1 to 0.6 mg/hr and he is tolerating this fine. He is still having some seizures, but once again they stop on their own and do not 'cluster'. He took a nice nap this afternoon and has been awake otherwise. His big battle has been his cough. He has a lot of secretions, and respiratory therapy is a frequent visitor in our room (so you know, I typed home instead of room at first. Hmmm.) giving him treatments and suctioning him. He is off oxygen except for when he sleeps and they suspect that will get better as the pneumonia goes away.

The plan for the weekend is to continue to wean off of the versed drip (this means we could leave the PICU and go to the epilepsy floor), increase his felbitol to it's final dosage tomorrow or Sunday, and remain stable seizure-wise. The ketogenic diet will start when his pneumonia clears. I told the doctor today that my dream "best outcome" would be to end up on the ketogenic diet and only 1 other seizure medication to control his seizures. He said that we will work toward that goal, but that it will be a slow process. Right now, they are just trying to get us home! And I agree with that short term goal!! 25 days is too long (and i expect we will hit the 1 month mark before we leave here) for a person to be in the hospital.

Day 24

Hi, it's Kristen, bringing you...

Words from Jill:

Today has been the first positive day we have seen in a while. I didn't update yesterday, because it was pretty much more of the same. Up some meds, decrease some meds, discontinue some meds; and Matthew would seize whenever he was awake until we gave him enough medication that he would sleep. Frankly, I was getting sick of it.

Yesterday, I started doing more research on the ketogenic diet (google this if you are unfamiliar with what the ketogenic diet is). I have a lot of reasons to believe this may be part of our answer for Matthew. I was going to be insistent today that we start this diet. Dr. D has said that this diet would be our next option. In talking with both the doctor on call (Dr Frost) and Dr. D that is would not be good to start it today because one of the side effects of the diet is that is can lower you ability to fight infection. The reason this is important for Matthew is because on Tuesday (or Monday??..I can't remember) he started coughing A LOT more. They took a specimen from his sputum (gross, sorry) and he has pneumonia, again. They think the antibiotic they started him on 2 weeks ago (after he extubated himself and got food into his lungs) was not strong enough to kill the bug. He had finished that antibiotic last Thursday. So they did a sensitivity on the culture to see what antibiotic would be best to kill this bacteria. (Wwhich by the way,the bacteria he has is a bacteria that is rampent in hospitals...go figure). They would like for him to get better from the pneumonia and then we can start the diet. I understand this and will wait a few days. The doctors both believe that having this infection may be part (or most) of the reason that we are not able to control the seizures.

Today Matthew was awake ALL day, and while he had quite a few seizures, it wasn't continuous and they would stop on their own. One of the new medications he is on can cause insomnia, and I could see this side effect today. I did get a couple smiles, and lots of "conversation" today from Matthew. He still has a viscious cough, and the staff is working hard to help him with antibiotics in his IV, antibiotics in his nebulizer treatments, chest percussion treatments, and frequent suction.

His seizure meds (once again for those who want to know, but also for my record keeping):
felbitol (increased today)
phenobarbitol
zonagram
tranxene
versed
fosphenytoin
..that is TOO many, and we will not go home until at least two of these maybe up to 4 of them are discontinued.

Thank you all for the continued prayers, phone calls, emails, comments, support and all you are doing for our family! We love you all!

Day 22

Hi. It's Kristen. I have...

Words from Jill:

Not much new to report. Matthew has slept almost all day. When he awakes, he has seizures. They've upped some meds they think might help, decreased others that haven't helped. The new ones aren't helping either. I've quit keeping track of what they are giving him and when. I can't remember if I said, but his MRI was fine.
His list of seizure meds today (for my own information mainly, in case someone asks, so I can go back and remember)

Versed
Fosphenytoin (loading dose given today)
Felbitol (increased)
Lacosimide (decreased)
Phenobarbitol
Zonegran

Monday's Update

Hi, it's Kristen, posting...

Words from Jill:

Today has been pretty uneventful, really. Matthew had a rough night, with lots of increases in his medications, and lots of extra medications that were 'loaded" to try to stop him from having seizures. They would work for awhile, but his little body would rise above them and he would have more seizures. I only got about 5 hours of sleep last night at best, and Matthew's night was almost without sleep. By morning, his oxygen requirements were increasing and he had a horrible cough. The doctors were concerned he would need to go on the ventilator again. They did a chest x ray, and lab work. It all came back fine, so they are assuming his respiratory drive is depressed due to all of the medications. I was up by 6:30, and by 8 am I knew I needed to go back to sleep. I was very grumpy and could feel it. I think my sleep deprivation hit a high, so I took myself promptly back to bed.

Matthew had an MRI scheduled for 1 pm and so I got a couple hours of restful sleep and then went out to his room to see him. The nurse said he had a very quiet morning and she was able to wean him off the high flow and his lungs sounded much better. They took him down to MRI and it sounds like he did well down there too. He came back to me resting comfortably around 2:30. We had a quiet afternoon, and waited for the neurologist to show up. By 6 he hadn't shown up and I asked to have him paged. Of the three epileptologists, this is the only one I had not met. He called back and said that he was not on campus, and he would not look up the MRI results, but that he would be in in the morning to talk with me. I can tell that this will not be one of our favorite doctors. Dr. D has already offered to come see us everyday we are here, so I am content with that. Matthew has slept most of the evening away, and continues to have few seizures. I think he may have his nights and days mixed up, so we'll see what tonight brings. He tends to give his night nurses a run for their money.

Not much new to update, but sometimes quiet days are good days.

Rolling with the Punches

It's Kristen here, bringing you...

Words from Jill:

Rolling with the punches

That's how I feel today, like we just need to keep rolling with the punches. I left off yesterday saying that Matthew was just starting to wake up. Shortly after 5 pm we saw the first seizure. It was short. But each seizure that followed continued to get closer together and lasting a bit longer. By 7pm he was back on the versed drip. This seems to knock the seizures out flat, and hasn't been horribly sedating. This kept the seizures at bay for awhile. He was still awake when I left him around midnight to go to sleep. I got a phone call from the nurse around 5 am saying that he was having progressively more seizures since 3 am and they were calling Dr. D. He had them up the versed and give a bolus. That seemed to help, so I was off to sleep again around 5:45. At 6:30, they called again and said he was seizing almost one on top of the other again. ( I have asked the nurses to call me if anything changes, since I am not able to sleep in his room. I sleep better when I know they will call me if anything changes). Dr. D had ordered to give him a load of another medicine and up his versed. When the nurse tried to flush his IV and Matthew pulled his foot back and started crying. His IV"s have not been lasting long, and this one, too, was done for. I asked about a central line instead of just repoking him for another IV (a central line goes right into a deeper big vein, and can be used a lot longer. You can also draw blood off of a central line). They said they would ask the intensivist if he would. The nurse told me that he was one of the best at doing these. He came over immediately and started it. It went in as slick as a whistle. We think that some of the increase in seizures was due to the fact that Matthew's IV probably started going bad early this morning. When I came to see him at 5 am, she said that she thought it was probably not going to last much longer.
We restarted all his meds and it took a couple hours, but he's resting comfortably now. Matthew just needs more time. More time to adjust to the new meds. We are just learning a big lesson in patience.

I so badly want to be home with the kids, and miss them like crazy. I know Matthew is in the right place to get these seizures fixed so, that does help my sadness of missing my other kids a bit. We've talked about Steve and the kids making a big road trip if we are still here next weekend. I've never been away from them this long.
So I'm off to take a nap. I'm gonna try and catch up on a little much needed sleep.

Saturday Update

Hi. It's Kristen, bringing you...

Words from Jill:

Matthew's nurses said that matthew had a good night and slept pretty well. They do not allow you to sleep in the PICU here, but have amazing sleep rooms for the parents that live far away. I slept in today (8:30) and Matthew was asleep when I came in. Dr. Doescher came in and was ready to make some drastic changes in his medications. They got rid of 2 of his medications (Depakote and Tranxene) and halved his IV sedation (versed) and then started him on a new medication (felbetol). Matthew was still pretty sleepy around 2 pm so he decided to get rid of the IV sedation. He slept today until around 4pm and he's just starting to wake up. I've got a couple of smiles from him. We are going to probably take off one more medication this weekend that is very sedating and hasn't been working for his seizures. We'll have to see if the new medication keeps his seizures at bay. Time will tell. My friend and co-worker Vicki is here in the twin cities today and came up to visit. I snuck out of the room for a little bit and I was able to have lunch with her and her husband. YUMMY!! and so much better than hospital food. I enjoyed my mini break and knew that Matthew was in good hands. It hopefully will be a quiet restful weekend for Matthew.

Friday Update, Part 2

Hi. It's still Kristen, posting for Jill...

Words from Jill:

So things have not gotten any better today. After they started the IV, and gave him the IV medication (fosphenytoin), his seizures kept coming. They decided to load him with a third medication (ativan); and we did not get breakthrough in seizure activity. We had come to a dead end. The only choice left to break the seizures was ANOTHER trip down to the PICU to start a sedation drip (versed). So, now I sit beside Matthew's PICU bed. He is sound asleep and not having any seizures. I 've talked at length with Dr. D. We are getting to the end of choices of medications for Matthew. He has a couple more he will try and a few different combinations of medications. If none of these work, we will try the ketogenic diet. This is a diet that is high in fat, adequate protein, and very low carbs. For some reason, some children have awesome results with this diet. Some do not see any difference. I'm very tired of the roller coaster, and I can't imagine how Matthew is feeling about all of this. He has been through the ringer. I wish I could take his place. You don't know how badly I wish I could take this pain away from him.

Updates on our friends in the Omaha PICU:
Olivia is extubated and breathing on her own, but suffering from withdrawls of medications and having some very uncomfortable muscle spasms that could be a result of her possible brain injury.

Thomas is a fighter; he had a bit of a set back today and is needing some medication to bring his blood pressure up after a procedure, but he sounds as if he's holding his own.

I also met a mommy today of a 4 month old little girl who just got a diagnosis of 2 very bad forms of epilepsy. The doctor told her it was similar to the whole brain just being "scrambled". We hugged and the tears poured down her face, I was very quickly brought back to the times when Matthew was so little and how scary things were. Not that they are less less scary now; but I am somewhat used to seeing these things and God has given me an amazing sense of peace about Matthew. He loves Matthew even more than Steve and I do. That's so hard to imagine. Please pray for these three precious kiddos.

"Dear Friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed." 1 Peter 4:12-13

Friday Update

It's Kristen again. Here are...

Words from Jill:

DAY 18!!!!

So not much new to report. Last night as soon as Matthew woke up, he started having short little seizures, but pretty close together, so the decision was made to "load" Matthew with a quick acting medication to stop the seizures. This did the job, and Matthew slept all night and most of the morning. He was off oxygen all day, but during the evening he required oxygen again. I think he kept the night nurse busy with suctioning him and such, but I was so tired last night, I didn't hear a thing.

Dr. Doescher came through this afternoon, and said that this will not be an easy fix. He is on so much medication, that the doctor is not sure which med to decrease first. He did make a decision to decrease one of them, and we'll see how it goes. I think this is going to take some time. Meanwhile, when Matthew woke up this afternoon, he started having the seizures again, so they loaded him again, and started an IV (#14 in case you'd like to keep track, and IV poke #32...that tally does not include blood draws). The seizures have not stopped yet, so they will have to give him another medication in his IV to try to stop these seizures that works quickly until the non-sedating medications have time to work. The non-sedating meds take longer to kick in, so we have to wait patiently.

I'm afraid that we're hunkering in for a bit of a long stay. I'm willing to be patient though, because I've seen the results we get when we are here. I have much more tolerance. Even though I miss my other kids and my hubby immensely, I know this is what's best for Matthew. And I'm hoping that we'll be home by Thanksgiving. And if we get to go home sooner, I'll count it as a blessing.

Thursday Update

It's Kristen again, bringing you....

Words from Jill:

Matthew had a bit of a rough night last night. He has so much junk in his lungs and the back of his throat that he has to try to cough up. He is so sedated with all of his seizure medications that coughing is hard for him. So he is having a hard time keeping his oxygen levels up. The nurses and I were up frequently suctioning him, and we finally just put oxygen back on him around 3 am. I woke up at 8 and fed Matthew and then we both went back to sleep at 10 and slept till 12:00.

Dr. Doescher came in shortly after noon and gave us the plan. After looking Matthew over, he asked if this is how he's been (activity wise). I said yes and some days were worse than this. He couldn't believe it. He was not getting the same picture of Matthew over the phone. He apologized for the delay of getting him up here, but he said he didn't know he was that bad. We talked about making a plan for the future in case something like this would happen again. He said unfortunately that he got two very conflicting stories from the doctor and myself and that was very frustrating for him. He sees now that he was not told the whole story.

Dr. Doescher also got a pediatrician involved, and they ordered for chest percussion to be done to loosen up the junk in his lungs and then another medication to be given by way of breathing treatment to thin his secretions. He already sounds so much better!

I am at peace here. The difference in care is night and day. I trust Dr. Doescher as he's done such great things for Matthew in the past. I'm starting to really miss my other kids, but know that this should be the final step to get Matthew home for a long time.

Thank you for continuing to pray for Matthew and our family! We appreciate your prayers and the kindness showed to our family!

Night Update

Hey, it's Kristen posting for Jill again. I am glad that I had the urge to check my email one last time before I head to bed. I found a message in my inbox with Jill's latest update.

Words from Jill:

It's 10 pm here, so I don't know if Kristen will post it tomorrow (it's really 11pm for her). Matthew got moved from the PICU to the epilepsy unit. He is off oxygen and we have not seen any seizures. The epileptologist came in this evening and said his EEG isn't "clean", but it never has been. We know his brain is abnormal. They have halved one of the 4 new medications that he is on. We are going to try to not have him sedated but relatively few seizures. Matthew's attending epileptologist will be on tomorrow, so he will hopefully make the big changes. I think it will probably be baby steps, but I am excited for the changes. Matthew has been relatively awake tonight, smiling. He still is very congested and coughs a lot and struggles a bit to breathe, but being off oxygen is good. Not much new to report, but I think we'll have even more information tomorrow.

An Update

Hi, this post comes from Kristen, Jill's blogging and I.R.L. friend.

Her and Matthew made it safely to Minnesota but Jill cannot post updates on her blog from the hospital. So I am privileged to be her and Matthew's little carrier pigeon while they are there. Jill can still view all of your comments though, so post away!

Words from Jill:

We finally got word at 8:45pm that the plane had left Sioux Falls, SD and was headed for Omaha. There had been more urgent kids that needed to travel, and so we got bumped. By the time they landed at the airport, then rode in an ambulance to the hospital, it was 10:30 ( I think, my brain is mush). It took a while for them to get report and load Matthew. They, at their discretion, could also decide if I was able to ride along. I was petrified that I would not be able to ride along and then have to get in the van and drive 6 hours in the middle of the night. Thankfully, they allowed me to go. We got to the plane (it was a small "fixed wing" medical plane) and I think the fight was about 1 1/2 hours. It was a nice flight and Matthew tolerated it well. I typically have a little bit of anxiety flying, but I was surprisingly at peace. We knew we had so many prayers traveling heaven ward!!

After we landed, the ambulance was by the tarmack waiting for us. We loaded in and it was a quick trip to St. Paul Childrens. When I looked at the clock, it was 1:30 A.M.

Report was given, blood was drawn and Matthew's EEg was hooked up. We were admitted to the PICU, but the plan for the day is to get Matthew to the epilepsy unit. He needed to be admitted to the PICU so it was a "lateral" transport (I think that's the right word). Basically he was taken from a PICU, so he had to go to a PICU.

Thank you Kristen, for keeping all of our friends and family updated!! I totally forgot I couldn't access my blog at this hospital. Kristen will do a fantastic job of keeping you all updated while I am here. I will probably send her more update this afternoon/evening and let you all know what's up.

I can't wait to see how God is going to work through the neurologists today. I'm ready to get my baby back!

PRAISE THE LORD!!!

We are flying!!! We will leave today, in probably a couple hours! We are set for take off!! PRAISE THE LORD!! I don't know if I can take my computer, or even if they will take me on the plane. I will update in Minnesota when I know more.

I'm at peace today

"Say to those who are fearful-hearted; Be strong, do not fear!!

Behold your God will come with vengence;

with the recompse of God, He will come and save you."

Isaiah 35:4

I spent some time on my knees and in my bible last night. I'm gonna let God work on the hearts of these doctors today.

3 hour tour

Today, Matthew had been doing so well since Friday afternoon,(he has actually been seizure free since friday) that they decided to it was time to move him back up to the normal floor and out of PICU. We arrived on 4th floor around 3pm. At 3:30 I looked over and Matthew was twitching. It was short; about 45 seconds. By 5:00 he had had 5 of these less than 1 minute twitches. Then around 5:30 he had fallen asleep (or so it looked) and then his o2 saturations dropped; dramatically...like to 74% and they wouldn't come up. We got the attention of the whole 4th floor and a few doctors too. Scared me. His pupils were still reactive, but pinpoint small, and he was not arousable. By the time we got him back down to PICU around 6:15 he was awake and smiling. Bizarre. I was comfortable being back where we would receive more one on one care, though.

All was looking well, and they were weaning him off of his oxygen tonight, we went to rounds and he was smiling and happy. Around 10:00, he did it again. Looked as if he was sleeping; perfectly still, and his sats dropped again to the low 70's. No one is quite sure what is happening. This is another reason we NEED to be in Minnesota.

Speaking of Minnesota, the saga goes on. Our neurologist I think is painting a much better picture of Matthew to his epileptologists than what is really happening. He told them we had been stable all weekend. Due to this, they don't want to see him until Thursday. So we sit. Tonight around 5 pm, I decided to take matters into my own hands. I called the doctor myself. I told him what was going on was unacceptable. I told him Matthew was starting to seize again and that it was important that we get him up there. He told me there was nothing we could do tonight and that they will address it in the morning. I intend on calling again in the morning. The squeaky wheel gets the grease.

I'll be honest, I'm scared. I feel trapped. I'm not sure we're being listened to. I feel like if we don't get there soon, it could be bad. BAD. It feels like we've let this go on too long. I'm starting to be very nervous of what Matthew's future is going to be; especially if something doesn't happen soon.

Please, PLEASE pray that God will make the doctors very acutely aware of what is going on here. Pray for Matthew. Nurses ask me how much of Matthew's baseline activity we are seeing. I'm telling them 10-20%. Pray that his little body holds on, and that his little brain is protected from the storm of seizures. And please pray for me and that the right words come from my lips. That everything I do glorifies God.

Sunday night

Today has been a very relaxing day. No new orders. Matthew has slept most of the day. I have noticed tonight that Matthew is having a harder time keeping his oxygen saturations up. They had to switch him from a nasal canula for oxygen, to a mask. I intend to talk to the doctor tonight at rounds. This morning they did not want to take away any of his medications( they currently have him on 5), but I have decided now that he is too sedated. I will ask to get rid of 1 of his seizure medications.

Nothing else new to report. Hoping to work on gettin' out of here tomorrow.

Late update

Sorry this update is coming in so late. Matthew had a very quiet day. He slept for the most part, but did have a few wakeful periods and we even got some smiles. Through the night last night they were able to wean down the drip he's been on to the lowest rate and all day he has been seizure free. This evening, the neurologist came through (one that is not normally working with Matthew) and did not want to make any changes. He is one of the doctors we've seen in the past and have not been overly pleased with. The intensivist (the doctor that runs the ICU) was not particularly happy with the doctors lack of enthusiasm to get Matthew off some of his medications; so he went over his head and did it. He says he doesn't believe he needs to be in the PICU, and he thinks his seizures can be controlled without all the medication he is on. We've had quite a few good intensivists here; and this doctor is no exception. He took Matthew off of 2 medications; one IV and one oral; and replaced the IV one with the oral form. He wants to make changes, but wants to go slowly. Matthew is resting comfortably and I intend to do the same.

Quick update on some of our new friends here. Thomas is starting to open his eyes more and look around and he is defying what the doctors have said about him. He is a fighter. Olivia, too, is amazing the doctors and had a complete turnaround in her chest x-rays and improving heart function. These new friends are just that; previous strangers pulled into life long friendships under circumstances that none of us expected. But we have all become fast friends; and have started having nightly "pow-wow's" in the waiting room to hash out our days. It makes the days easier. Thank you for praying them and all the other sick babies here in the PICU.

WE'RE BAAAACCCCK!

We did get our conference that we wanted and had some plans in place for transfer; but by mid morning it didn't end up mattering

Today, shortly after 11 am, Matthew began having seizures. He would just get over 1 seizure, get a short break and start another. The doctors tried giving him more medication and it didn't work. So the pediatric intensive care doctor came down and started an IV. They gave him more medicine in his IV; with no help. They gave him a third medication, and he still continued to seize. They made the decision to that we should go back to ICU and start him on a drip of medication that would stop the seizures. He was on this before and it required a ventilator. Well, that put my little poor tired mind into overdrive; and I did what I never thought I would do. I yelled. I told them we COULD NOT do this again. NO ventilator; no ICU. I can't do it all over again. I told them in no uncertain terms that we needed to go to MN now. After the shock wore off on everyone's face (I think they realized I was serious). They called MN right away; but the doctors in MN were unwavering. They did not want him there this weekend. All of the pediatric neurologists were off for the weekend and an adult neurologist was covering. They would be of no help to us. We were stuck. We had two choices. Continue to watch Matthew seize, or sedate him again. I crumpled into a pile of tears. We had no choice. We would go to the ICU. Once of the residents informed me (thank you dear resident for having the intuition to know I didn't fully understand) that sedating him didn't necessarily mean having to put him on the ventilator. I had a ray of hope that he wouldn't be ventilated and that we could get him seizure free.

When we got down to the PICU, the nurses could tell I was super frustrated. I told them what was going on and they immediately kicked into action. They said they would do their best to get us to Minnesota as quickly as they could; but we needed to restabilize Matthew first. The drip was started and within 1 hour he was resting quietly, not having seizures and breathing on his own. PRAISE GOD!!

As we sit here, Matthew is still sleeping comfortably. They are reducing the drip a bit; so we can get the exact dose he needs with the least amount of sedation. We are comfortable with his care FOR NOW. The work to start a transfer will start up again Sunday. I think I am learning a lesson on patience.

We're hoping for a quiet, restful weekend. Thank you for your continued prayers.

Blog button

I great friend of mine with help from Micah made a blog button for Matthew...you can see it on my right hand side of my blog. If you like it and you want one for yourself...go here... and copy and paste the HTML in the box. Thanks Beth and Micah!!

Tired....

I'm tired. I'm done. Done with this. All week we've been talking about getting Matthew to Minnesota, getting him the care he needs; getting him on a plane to Minnesota. But today, those plans all fell to pieces. I found out today that the doctors here in Omaha have not been talking with the doctors in Minnesota as I had previously thought they were. They even went as far as to tell us to get plane tickets today for tomorrow's expected trip. But as the day wore on, the truth came out. There has been a large lack of communication. I am frustrated by it. Frustrated seems to be a word I type alot lately. We do not know what is planned for tomorrow. As of right now, we will not be traveling by commerical plane. Just as our neurologist was telling us Matthew was "too stable" to go to Minnesota, and that we should wait to go to Minnesota until we have some time to see what these new medications will do, he noticed he was having a seizure. I hadn't had a chance to tell him yet that we had seen a few of these today. He immediately ordered another EEG. He had 4 more of these "events" The doctor read the EEG and says he thinks he's having seizures. He's not sure if all 4 are seizures. When I asked him about the plan now with this new information, he tells us he is too "unstable" to fly. They have given him MORE seizure medication. They wanted to give it by IV, but Matthew has no IV access. They tried, without success, to get an IV in. So they have given the medication in his g-button. It will take longer for the medicine to act in his system.
I'm not understanding the logic by this. One minute they don't want to see him in Minnesota because they are being told he is stable; the next he is too unstable to fly.
I'm tired, and irritable and not okay with going home or staying in Omaha. All I want is to go and get the care that Matthew needs so we can go home and return to our normal family schedule.
I have not gone into all the details of today; it would takes pages, and I am choosing not to rehash it, again. I've visited with the charge nurse and the head physician tonight and I believe we will all be having a conference tomorrow. We need to get on one page. Right now the epileptologists in Minnesota are also very frustrated that these doctors do not have things in order here. Matthew deserves better.

"I know the plans that I have for you, declares the LORD. They are plans for peace and not disaster, plans to give you a future filled with hope." Jeremiah 29:11

Another day

Today has been pretty uneventful. Matthew started having a little bit of a hard time breathing this morning and ended up back on oxygen. The amount of anti-seizure medication Matthew is on makes it hard for him to be awake and also to be strong enough to cough and clear his airway. So all the extra "stuff" he has in his throat has been our nemesis. They made a decision to but him back on the medicine to help with his secretions; and that helped temporarily. Around 4, the crud was back and he was coughing but couldn't keep his airway clear enough. I know when I have a bad cough that it feels better to sit more upright. It's hard to sit upright for Matthew though without lots of support, and he ends up sinking down in the bed and being uncomfortable. Suddenly, I remember that I had seen Matthew's floor positioner out in the car earlier today, so I asked if they thought it would help. The nurses said it was worth a try and I ran to the car and got it. Within minutes of putting it in his crib and getting him seated; his oxygen levels were up, he was more comfortable and he fell asleep. And then we both took a 2 1/2 hour nap. Yeah for us!! He has been so comfortable ever since. He still has some mucous to deal with, but it isn't a constant thing. We're weaning him back off of his oxygen and we're checking blood levels again tomorrow for his seizure meds. I think he is on WAY to much; and that is part of our problem. We are still seeing some twitching activity, but not a lot and I'm not making too big of a deal about it; because I really don't think we can accurately treat it until we get to Minnesota. I can't tell you how badly I want to be there. I know we will get a solution once we are there.

I don't think because of his oxygen requirements today that we'll be leaving tomorrow; but perhaps Friday. I will visit with his neurologist tomorrow to see if perhaps we can get tentative plans in place for when we are going to Minnesota, so I can get plane tickets. I'm partially hoping we can just go when we get dismissed on Friday; but also partly wanting to have the weekend home with my family (although I work all weekend) and then off early next week. We'll see what they say tomorrow.

Thank you again for all of your prayers and support. We couldn't do this without you!!

MOVIN' ON UP!

Last night, Matthew had a pretty good night. He received another dose of medication to help with the inflammation in his airway and he slept very well until 3 am. At three, he was up and coughing; but he was much stronger and was able to cough and clear his airway, so they did not repeat the medication again. He was also weaned off of his oxygen last night. The doctors came through again today and said we could start feeding him again. He is tolerating that marvelously. Then the neurologist came through and I told him that we really hadn't seen any seizure activity and he was happy about that. His depakote level was low due to the fact that phenobarbital lowers the level of depokote in your blood system. He was going to increase the depakote, but since he was not having seizures, he decided it was fine for now. He still agrees we should go to Minnesota soon. However, he believes it will be better to set this up in a manner that we can take a commercial airplane rather than a transport. A transport is VERY expensive and it's better to get two plane tickets. I am okay with this as long as he is stable. If this happens, most likely we would leave with in a couple days of being dismissed from the hospital. While Matthew is seizure free at this time; he is very doped up on medications and not himself. It is a fine line of seizure control vs. sedation for Matthew. The "best of both worlds" be determined if we use constant EEG to help us. This care is not offered here. The closest place is Minnesota.

Around noon, the doctors decided it was okay for Matthew to leave the PICU and go to the regular floor. Yippee!! We are now upstairs on 4th (instead of 2nd) and it is so quiet. I didn't realize how noisy the PICU was. I had gotten used to it. The doctor on this floor said that she thinks it will be "another day or two" and we'll see how he's doing. I'm looking forward to having Matthew back home, seeing my kids, having our routine, and having my own bed!!

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Please also continue to pray for Thomas. The doctors told his parents today that they don't think he will ever "wake up" but they are holding onto hope that God will perform a miracle.

We also met another little girls parents. Her name is Olivia and she quite breathing twice in Lincoln at the hospital due to complications of pneumonia. She is the same age as Matthew and she came in the same day as Matthew did. They still have many days to spend in the PICU.

It's hard to think of all these precious babies in the PICU fighting for there lives. It's a very visible reality of how fragile life is.

Day 5 in the PICU

This morning Matthew was somewhat awake around 9 am and I was so excited; it was time to get the tube out. When I told the respiratory therapist; she said that we had to wait until rounds were over. We that is usually around 1 pm. I sorta lost it when she said that. I basically said that I was sick of waiting when for when it was convenient for the doctors instead of convenient for Matthew. I know that it's probably not the best way to handle it; but I couldn't help myself. I'm tired and my temper shortens when I'm tired. The respiratory therapist talked to the charge nurse, who in turn talked to the doctor and he came right over and he agreed he could be extubated now and that we wouldn't have to wait until later. Around 10 am they extubated him and he coughed and sputtered for the next couple hours. He had so many secretions from his airway being so irritated that he was having a hard time adjusting to breathing and keeping his airway clear. They gave him a medication to help dry up the secretions he was having, which helped almost immediately and he slept very comfortably for about 3 hours. He was still working hard to breathe, but he could sleep. Around 4:30 he woke up and was working hard again to breathe. They gave him a breathing treatment and some medication to decrease the swelling in his throat. This has seemed to helped some and he is resting semi-comfortably now. He has not "eaten" since Saturday night in preparation for having the tube removed and they do not want to feed him until they are sure he will be fine respiratory wise. Maybe this evening we'll start feedings.

I talked with the neurologist this morning also and he thinks it will be best for us to go to Minnesota also. He is a different neurologist (the doctors take turns taking hospital call in 2 week segments) and he is known as "the best pediatric neurologist in Nebraska". He has a special interest in epilepsy. He said his EEG is very difficult to read and things don't match up. He said we can look at transferring him as soon as he is stable with his breathing for 24 hours. I am optimistic about this. They always seem to find the right balance when we go to Minnesota.

We'll see what tomorrow brings.

Matthew was weaned from his sedative last night at 6pm. He awoke around 9 pm and he had a rough night. He was awake; but the doctor didn't want to extubate him (I won't go into any details on this other than we had a very frustrated nurse and mom by morning). So all night he coughed and cried and fought the tube. Even though he is intubated, you can tell he is crying by his facial expressions. You can't hear it, but you can tell. So, I didn't sleep well because I was up and down with him trying to comfort him. I was happy when morning came because I was sure they would pull the tube. This morning, his lab work showed that his phenobarbital level (a medication used to control seizures) was still low in his blood. It was a little confusing to the neurologist because he was getting this medication twice a day orally and also daily IV boluses. His blood levels, though would not go up and had even decreased today. So they doubled his IV dose. Immediately after that dose he feel asleep and was comfortable. I was talking with the nurse shortly after she gave the IV dose of phenobarbital and told her that the doctor had also increased his oral dose. She said...what oral dose? I told her that he should be getting phenobarb in his button twice a day; and she said he hadn't been getting this. So upon further evaluation; the doctor had not written the original order, but had written that he had started it in his progress notes. That could be a big reason why we are still seeing these twitches. I will be perfectly honest with you when I say that I don't believe in my heart that all of these things we are seeing are seizures. I could be wrong; but even the nurse today said that she doesn't think they are seizures. Another big reason I want to get to Minnesota.

So all day today the doctor has said that if he wakes up enough, we will extubate him (take the tube out). He has slept comfortably all day, which is comforting for me to see, but I still want the tube out, so I wish he would wake up. He is on what is called CPAP, so the ventilator is essentially off, and it will only click on if he doesn't breathe for 20 seconds. When he doesn't breathe, it alarms and the ventilator turns on. It did alarm once today when he was sleeping really hard, but he was just breathing shallowly, and was able to keep his oxygen saturations up, so they aren't even concerned by it.

I was able to get a nap this afternoon, as I could tell that my patience was growing thin, and I knew that I was sleep deprived. The doctor on tonight has promised me that whenever he wakes up, even if it is three AM, he will wake up and come extubate him. He has been our favorite doctor so far, so it is comforting to know he is on tonight. I will try to head to bed earlier than normal tonight, so if he wakes, I'll be able to be up with him.

Thank you all for praying. I'm sorry it took so long, but earlier I was not in the right mind frame to update. I will update again tomorrow. We have a new neurologist on in the morning and intend to have an in depth conversation about if/when it will be applicable to transfer him to Minnesota.

Saturday 10-31

All of Matthew's physicians rounded early today, so I can give you an early update. Matthew had a pretty good day yesterday and a peaceful night last night. He did spike a fever last night and one again this morning, so they are going to draw blood cultures. His white count is elevated now too, so this is also an indicator that he has an infection of some sort (I'm guessing a pneumonia, due to when he extubated himself on Thursday). He is on antibiotics and they are giving him Motrin to control the fever.

Matthew's neurologist feels that we can start to wean his sedative today. They have already turned it down 1/3 of the way and we are seeing his little personality come back a bit. He is opening his eyes ever so slightly when we talk to him and looking our direction. He is also trying very hard to lift both of his arms towards his face. (His nurse thinks he'll pull the tube himself before we pull it for him...she convinced he's a strong little dude). He even tried to give daddy a quick little smile.

The intensivist and his entourage (or according to my friend Michelle, a whole pester of doctors...) came and other than the blood cultures and weaning his sedation, they had nothing new to say.

So we are hoping that he will tolerate the sedation being weaned as this sedation had been keeping his seizures at bay. They do believe his other seizure medication (the new ones and the old ones) are up to adequate levels to help him. We are also praying the blood cultures come back negative and the antibiotic he is on helps whatever his body is trying to fight.

A song that touched my heart today

I have never heard this song before. I heart it today as I was sitting here next to Matthew. I felt God especially speaking to both of us through this. I think I will play it often today. If you are looking for my update for today, it is below.

Just another day in the PICU

Matthew slept well last night. This mamma did too, relatively speaking. Around 5 pm last night Matthew starting coughing really hard and he coughed the tube out and vomited all in one fell swoop. There were a few long minutes of organized chaos around his bed; especially since we had just "fed" him his first meal in his G-button but an hour earlier. There was alot of formula in his tube and the concern is that he may have aspirated some of his formula. That would not be good for Matthew. They don't know if he extubated (coughed the tube out) first or vomited first. If he did aspirate, that puts Matthew at high risk for pneumonia. Everything that have been suctioning from his tube today has been clear; so that gives us some hope; but he is running a bit of a temperature now. I'm guessing when they do rounds this afternoon they will order lab work to check and see if he is getting a pneumonia.

While he was extubated last night (for a total of about an hour) they had shut off his sedation medication. While that was off he had 2 short seizures. With that in mind the neurologist believes that that is our sign to keep him sedated and intubated till tomorrow. That will give us one more day to get his levels of all his medications to a level that will keep the seizures at bay. I am comfortable with this plan. Tomorrow we will begin the process. The nurses and doctors continue to reassure me that his lungs look very good, his ventilator settings are the lowest they can possibly run them on, and he is only on the ventilator to protect his airway. I need this reassurance; especially at night. I seem to have more anxiety with the ventilator late at night.

Also on the list of things to do today are to possibly get Matthew a PICC line which is an IV that would give us longer and better access than an IV. His IV will need to restarted soon, as they don't last long. PICC lines last a long time; he can be sent home with it if needed; and the added bonus is that they will be able to draw blood out of it, so he won't have to be poked anymore for blood draws. I'm guessing they will decide this on rounds.

I will do my best to update 1 more time at the top of this post this evening. My dad is here and my mom is driving here as we speak. Food is beginning to show up at our home too, I am told. Thank you; everyone, thank you for supporting us in your thoughts, prayers, messages, daycare, food, and everything else that I can't think of at this minute. Our family wants you to know we are so thankful, and blessed by your outpouring of love. I can't and never will be able to say thank you enough.

Some have asked if I would like company. I would love company, however, the hospital is locked down similar to Alcatraz due to HIN1 and they are making no exceptions. They are only allowing parents and grandparents to visit. So thank you, but at this point with all the illnesses floating around, I am comfortable with my computer, radio and my cell phone.

I do have a favor to ask of you today. I love getting messages and bible verses sent to me; so if you have the time today and have a special bible verse or just want to send me a quick hello via facebook or my comment section...it's my favorite thing to do, reading all of your comments and verses. In the evening when my anxiety is higher, the verses are nice for me to have and read.

And I have one more favor. Would you pray for Thomas?? Thomas is Matthew's neighbor in the PICU. He is 5 1/2 months and suffers from a heart condition, and seizures so bad they have caused brain damage along with other things. Thomas' mom and I were talking last night and they are not talking about "when" he gets out of the PICU, but more "if he makes it out" of the PICU. It is a very quick reminder of people who are in harder circumstances than us. It breaks my heart.

A new day

I apologize to all of you for such a late update. I wanted to wait until all the doctors rounded so that I had facts for all of you. Matthew is still in serious but stable condition. He is still intubated and they have him sedated so that his brain can have a rest from the seizures and his body too. I slept very little last night as the two of us (Steve and I) shared a bed the equivelent of a large bench. I was very concerned last night and this morning of his pulmonary status and worried he would get pneumonia again. Ventilators and ICU are not my terrritory or area of expertise and when it's your own baby, it makes it worse. It's a case of knowing just enough to be dangerous and letting your mind wander. In this case sometimes ignorance is bliss. Matthew slept well last night and his nurse was amazing with us. She explained everything to me, in a way both of us could understand..she didn't take for granted that I was a nurse, and taught me just as she would teach any other mother. Last night, I appreciated that more than anything.

This morning, after much praying, many tears, and talking with the intensivist (they are the doc's that work in the ICU) to understand more; I am at peace. I am at peace with what is going on am less fear filled. Here is what we understand

• Matthew's lung status is good. He has no signs of infection, and he works hard to cough his secretions. He is still doing much of the work of breathing on his own.
• They will keep him sedated 24-36 more hours to give his brain and body time to rest, before talking about weaning him off of sedation.
• After lots of communication with Minnesota; the doctors here are following the lead of the Minnesota doctors. They have done another EEG, which shows no seizure activity (!!) and are starting him on a slew of meds. While the epileptologist and I are both not excited about this; he feels this is temporary and we will wean off of some when we feel he is well.

We hope all of these things work as planned and we get our Matthew back soon. He is very puffy right now, but peaceful and resting. We will most likely be here through the weekend, but we are in good hands. If things don't go as planned and he is stable; we may talk about transferring to Minnesota for more extensive seizure evaluation.

Again, I can't tell you all enough how much your kind words, texts and messages mean to me. You all are ministering to me in a way that I could have never imagined. I am in awe and it brings me to tears to think of all the amazing people in our lives who care so much. Even complete strangers are praying for Matthew. You all are amazing. We love you all so much. You have lifted my spirits and held me up. Thank you for lifting Matthew, me and our family up to God. I am reminded of the awesome God we serve! Thank you, Thank you, Thank you!!

October 28th

Midnight update:
I'm off to bed. Matthew is in critical but stable condition. He is sedated and the ventilator is breathing comfortably for him. I still have lots of adreniline, but I can also hardly keep my eyes open. This is new territory for me; someplace I never wish to visit again. Thank you, SERIOUSLY, THANK YOU to everyone who is praying for Matthew; and for all the kind words and texts. I'm not very good on the phone yet, but I can text and type okay with out crying (too much). You have lifted my spirits, calmed my soul and I even giggled once. Matthew is a fighter and he has a big God who loves him, and an unbelievable amount of people who love him and are praying faithfully for him.

KEEP fighting Matthew!!
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11:15 pm update

Matthew "crumped" very quickly shortly after I updated. He was quickly (VERY QUICKLY) escorted to the PICU and intubated and on the ventilator now. Steve is here. We are praying for our sweet boy; but we are scared. Please continue to pray. ♥
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9:30 update:
Doc just left Matthew's bedside to talk to nurses in PICU. Looking to get a room for him. Talking about some hard things. Steve is coming.
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8:30 pm update:
I feel like we are going from bad to worse. I don't want to worry any unduly and sometimes I worry that I'm overexagerating, I'm trying very hard not to. But my nurse/mommy gut says things aren't going well. If I had to guess, I would say that we will either have to transfer to ICU tonight, or we may be headed to Minnesota sooner than planned, if things do not change. Matthew is very puffy, he is not managing his secretions well, and his oxygen levels are not staying where they should be. The nurses are suctioning his throat and mouth frequently. They got out the ambu bag and put it in his bed (This would breathe for him if he was unable to). Though he is very sedated, his seizures are continually getting closer together. We have 2 doc's and 2 nurses at/around his bedside and in his room. I'm now starting to officially worry.
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4:45 update:

Talked with Dr. Doesher. He is happy with all we have done. He wants to give the current plan one more night. He says that if he is still as bad in the morning he will consider transport tomorrow evening or Friday morning. He does not want to do the ketogenic diet for Matthew due to the fact that he is currently on depakote and that makes the diet higher risk, and also because Matthew has a kidney malformation. So we will see how the night goes. Matthew is still very sedated from all of the medication they have given him, and Dr. Doesher was suprised that he was not on the ventilator due to all the medications we had given him.
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2:45 update:
EEG was done today. Almost all of the twitching events we are seeing are seizure activity :(. Which is bad since this started Thursday, and we thought these were the same thing he was doing in July. But we know now that they aren't. And he is still having these events even though he has SO much medication on board So the doc's have talked to us and given us three options
1) Fly to MN and have them evaluate him and start his plan of action. 2) Give the new meds some time to see if they help 3) start the ketogenic diet. (a high fat, high protien, low carb diet that can help children with difficult to control seizures obtain seizure control. Results with this diet vary widely. Some have great results. Some not so much.)
Right now I have a call out the MN. I trust Dr. Doesher immensely. I want to conference with him. I want to see what he thinks is best, to see if he has a bed for Matthew and if he thinks that being up there would help us sort this out (I think so, they always seem to get answers fast for us). I value his input and once we have his opinion, Steve and I will make a decision. I hope we can make this decision before today ends.

Thank you for praying!! We know the Master Physician is keeping Matthew ever in his care and are praying for him to guide the earthly doctors to make wise decisions in Matthew's care. I will update again if/when I have more information.

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Original post

I updated my original post yesterday with what happened last night. I am going to use 1 post per day and just update at the top as I go along. This morning neurology has come through and Matthew will have an EEG today (this morning). We discussed medication options, and discussed the possibility of going to MN if Matthew continues to be a difficult case. He is not having large seizures, but having 90 second twitching episodes that happen every 5-10 minutes. We are unsure at this time if they are seizures, because Matthew likes to be difficult like that. In the past we have seen things that look like seizures, but are not seizures on EEG. Soo, an EEG will give us more information. I will try to update later today if/when I know more. Thanks for praying!!

ER stay number 6229

Updated: @ midnight
I think I will post everything for one day on one post and just update on the top as the day progresses.

Not much new, other than we are in a room in the step-down ICU. He is still having these "twitching" episodes that last 1-2 minutes that we are unsure if they are seizures, but no long seizures. During these "twitching episodes" he will cry for painful stimuli (read: pinching) but doesn't move his eyes or respond any other way to you. During the longer episodes, he is not responsive to pain. So who knows what is really going on. They have him on a whole slew of medications right now. The attending doctor told us that the amount of medication they had given to Matthew to stop his seizures would have put any other kid his age on a ventilator. That's scary to me. But Matthew is a fighter, and he didn't even fall asleep, much less forget how to breathe :). He was even flirting with his nurse after she gave him all that medication. He was giving her smiles and "talking" to her.
I will say again, as I have said in the past when he has issues with seizures; that neurology care here in our great state is sub-par. The neurologist has YET to come see us, but has given orders by phone. No orders for an EEG though, which to me is ultimately frustrating. That would be the first thing I would do. But EEG's are not easy to come by in this hospital, and they must be scheduled and done between the hours of 9 and 4. That is probably my greatest irritation. This is the same doctor that,yesterday, when we were in our local ER for a grand mal seizure that lasted 5 minutes (a seizure type that Matthew has never had) said to just do labs, give one dose of ativan and send him home. Someday's, I honestly wonder if they care. Today(prior to the ER admission), we had an appointment with the neurosurgeon (he was the doctor that put in Matthew's shunt). I kept the appointment because I wanted him to look at Matthew and see what he thought. I told him what was going on, and he was irate. He said that in no uncertain terms we should take Matthew to Omaha, so that the ER doctors in Omaha would make them come see him. He said that if they tried to send him home without an admission, that I was to call him and he would make sure that Matthew was admitted. He said that sometimes you have to make lazy doctors do their job and this was the way to trump them.
Yes, he actually called these doctors LAZY...frustrating.
I sure wish that Matthew's epileptologists were closer. I would head there in a heart beat. My pediatrician called them for me this morning, because she too, was frustrated with our lack of care, and his epileptologist called her back within 15 minutes. Last time I spoke to her (our pediatrician) she had been trying to get ahold of our local neurologists for over 2 hours to relay the message of what she wanted done for Matthew. I don't know what the answer to the problem is, other than we live in the wrong place to get good neurology care.

I'm off to bed, I'm beat. Update more when I can
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Original post:

I don't have much time to update right now, but do want to let you know Matthew is in the hospital now, still in the ER and unstable, having seizures. He has had 6 seizures in the ER so far, 2 of them longer than 10 minutes. They are not his typical seizures and they have loaded him with 3 different types of seizure medications., and they seem to only be termporarily helping him. His shunt is fine and he is not sick with any illness. I will update again when we get settled in a room, which will probably NOT be soon.