I had to giggle when I woke up and found Charlie like this:
She didn't even seem bothered by the position. She was *conked*.
So I've kept the oxygen off. She does tend to run low, and she does still desat randomly, but I really don't think the oxygen does a whole lot for her and she so much happier without it. I don't blame her. I put it in my nose one time and having something blowing up there made my insides crawl. *shudder*
I also took her off the monitor. There's just no point anymore. If she's in that much trouble, I can tell. And we only plan to do comfort care anyway. So that's one less thing to worry about!
The biggest issue now is her digestion. Something is very wrong. She's not able to handle even 30 mls/hr which is what we've had her at for a week. She vomited formula once. For those not familiar with GJ tubes, that means her intestines didn't push the food through, so it backed up into her stomach in enough volume to cause her to vomit. She's having gagging and retching fits. Her poop is just pure liquid. It's not diarrhea
So the jerking...we had it under control for a little while, but she was unconcious almost 24/7. She did wake up the last few days, but she's started jerking yesterday and she's a little worse today. I was hoping to find a balance of meds to keep her from jerking but let her be awake. I don't know if it's possible. She's outgrowing the dosages as quickly as we get them adjusted. I'm just AMAZED at how much this child can take. She's on 5.5mls of phenobarb once a day, 3 mls of keppra twice a day, 3 mls of klonipin 4 times a day, 1/2 tablet of oxycodone 6 times a day, clonidine at least two times a day, 1.5 mls of baclofen 3 times a day. It doesn't even supress her respiratory system AND she still manages to wake up and jerk.
I talked to my friend Vicki about how her little girl responds to meds. Ava (her page is on the left) is only a bit lighter than Charlie and 3 months younger. When they gave her diastat one time, she was zonked for 16 hours and her vent was breathing for her. Charlie doesn't even go to sleep and generally her sats go UP after diastat. I *think* they get the same amount of diastat, but I'd have to double check. I don't know what the hell Charlie does with the meds. It's hard to believe she's even absorbing them correctly. Maybe she's not, who knows?
I also took her off the monitor. There's just no point anymore. If she's in that much trouble, I can tell. And we only plan to do comfort care anyway. So that's one less thing to worry about!
The biggest issue now is her digestion. Something is very wrong. She's not able to handle even 30 mls/hr which is what we've had her at for a week. She vomited formula once. For those not familiar with GJ tubes, that means her intestines didn't push the food through, so it backed up into her stomach in enough volume to cause her to vomit. She's having gagging and retching fits. Her poop is just pure liquid. It's not diarrhea
So the jerking...we had it under control for a little while, but she was unconcious almost 24/7. She did wake up the last few days, but she's started jerking yesterday and she's a little worse today. I was hoping to find a balance of meds to keep her from jerking but let her be awake. I don't know if it's possible. She's outgrowing the dosages as quickly as we get them adjusted. I'm just AMAZED at how much this child can take. She's on 5.5mls of phenobarb once a day, 3 mls of keppra twice a day, 3 mls of klonipin 4 times a day, 1/2 tablet of oxycodone 6 times a day, clonidine at least two times a day, 1.5 mls of baclofen 3 times a day. It doesn't even supress her respiratory system AND she still manages to wake up and jerk.
I talked to my friend Vicki about how her little girl responds to meds. Ava (her page is on the left) is only a bit lighter than Charlie and 3 months younger. When they gave her diastat one time, she was zonked for 16 hours and her vent was breathing for her. Charlie doesn't even go to sleep and generally her sats go UP after diastat. I *think* they get the same amount of diastat, but I'd have to double check. I don't know what the hell Charlie does with the meds. It's hard to believe she's even absorbing them correctly. Maybe she's not, who knows?
5 comments:
Shauna- have you ever looked into or heard of Progressive Myoclonic Epilepsy?
That looks like a great sleep - I hope that means you got some good rest too. Hope you're able to figure out something that will work with her gut to keep her comfy and hydrated. A friend's mom has end-stage colon cancer and can't absorb anything through her gut at all (which meant no amount of meds was helping). They are now doing patches/injections under the skin and it's made a world of difference for her.
OMG, thank you Anonymous! I just googled it and it does sound exactly like her. The outlook is not good, which I know even without a diagnosis. I'm looking for closure though. I'm calling cleveland clinic today!
I read about that when Charlie was younger, but I didn't know the name for it and that was before she was having so many symptoms. I just put it out of my mind....
Lily has the same issue with the feeding and the liquid poop! Wtf is up with it? We haven't gotten any answers for it either.
I don't know but we're giving her acidophilus twice a day just in case the abx are still wreaking havoc on her system (possible apparently...I thought she'd be over it by now). We're switching to elecare. And crossing our fingers I guess. I don't think there's much else to do!
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