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.
Monday, November 30, 2009
Friday, November 27, 2009
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!
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!
Wednesday, November 25, 2009
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!
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!
Tuesday, November 24, 2009
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!!
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!!
Monday, November 23, 2009
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.
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.
Sunday, November 22, 2009
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.
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.
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.
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...
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...
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!
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!
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!
Friday, November 20, 2009
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.
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.
Thursday, November 19, 2009
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!
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!
Tuesday, November 17, 2009
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
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, November 16, 2009
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.
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.
Sunday, November 15, 2009
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.
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, November 14, 2009
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.
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, November 13, 2009
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
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.
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, November 12, 2009
Thursday Update
It's Kristen again, bringing you....
Words from Jill:
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!
Wednesday, November 11, 2009
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.
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:
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.
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!
Tuesday, November 10, 2009
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.
Monday, November 9, 2009
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.
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, November 8, 2009
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.
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.
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.
Friday, November 6, 2009
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.
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.
Thursday, November 5, 2009
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
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
Wednesday, November 4, 2009
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!!
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!!
Tuesday, November 3, 2009
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.
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.
Monday, November 2, 2009
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.
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.
Sunday, November 1, 2009
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.
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.
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