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!
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