We’re in the BIG HOUSE Baby!
It’s 1:15 a.m. and I am writing this from the Pediatric ward of Georgetown Hospital in DC. Miss Courtney decided that she needed a little winter vacation and this was her first choice spot. The beds are comfy and the service is outstanding.
Mommy on the other hand would like to be anywhere but here.
As you all know Courtney has been battling high ammonia levels for almost a year now Her liver is telling us it’s no longer happy with the amount or type of seizure medication she takes.
We received word today from her Primary Care Doc that her levels were not what we expected. He was very concerned. Her ammonia numbers actually went UP by 20 points in the last two weeks instead of coming down. NOT GOOD!
Then yesterday she started having difficulty peeing. NOT GOOD again. Her kidney’s have decided to join the chorus of dissatisfaction.
Then there are the increased seizures and you know what a party those are.
So tonight we find ourselves in the hospital, under increased supervision in the Pediatric Ward instead of the PICU.
Why you ask? Because there were no beds in the PICU. Yep, this is a hip and happening place. A very popular vacation spot indeed.
She has a specially formulated IV in to flush the kidneys and has started meds to help rid her intestines of poop (the best way to lower her ammonia levels). In the last five hours she has done so multiple times and now we wait for her kidneys to catch up.
But once that’s done, it still doesn’t take care of the underlying issue of changing out her seizure meds so her liver doesn’t completely shut down sometime in the future.
So we meet with her nuero team first thing in the morning to decide what to do next.
Word on the street says they are considering “stripping” her of her seizure meds then building them back up. That would require us to be in the hospital for a little bit of time.
The second option is they move up the time-line of the home care plan we had in place before once she’s stabilized.
As for the third option…well we won’t go there…because there isn’t one. Our menu choices are extremely limited at this point.
So we ask for your prayers for our beautiful girl. Who knows what tomorrow will bring. For now they were able to get her stabilized and she is showing improvement.
Thanks you for carrying us though this night. I know God is here with us.
If I could ask for prayers specifically for Jerry and I. There are many decisions that need to be made on how we would like her care to progress and a little bit of divine wisdom would go a long way to bring some peace of mind and heart for both of us.
I will update you when I know more. For now…just keep praying…
Thank you all so much for being there for us and lifting our daughter up to the Lord…one more time…
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