Yellow
Aria is pretty yellow at the moment 🙁
On Wednesday she looked particulary yellow and with monthly bloods still a week away I was starting to get uncomfortable. There is always this balancing act as to when you mention concerns to the Starship and when you don’t. I don’t want to bother them to much but I also couldn’t let it go because I am not willing to make the call on what is ok and not ok.
So I emailed to ask if we could do monthly bloods early and sure enough her Bili had jumped from 57 last month to 93 🙁
This is disappointing, it really should be 4. Of course this makes me anxious as to if her liver is really starting to pack in and just makes me wish we were in Omaha. Still there are 4 other liver function tests we do and they are stable from last month so that is good news.
Not a day goes past these days where we don’t dream of Omaha. I think about it all the time. Crazy I know. Yesterday there a story about a Omaha mall shooting (turned the TV off cause it was 4 mins walk from the Childrens Hospital!) and something else on a comedy about Omaha Steaks.  So even when we don’t think of it it turns up anyway!
Please pray for Aria’s liver, we will appreciate that and please pray we might get to Omaha soon.
4 Responses to “Yellow”
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- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 2 Jul at 9:11 pm
Hoping the bili numbers go back down…and can’t wait for Omaha!! What an awesome thought!!
# 3 Jul at 5:11 am
I pray Aria will feel better, & the bili numbers go back down! I also pray that you will be able to go to Omaha very soon! Give her a hug for me!
# 3 Jul at 7:40 pm
Will be praying for both of those things!! Hope to see you Sunday
xx Deb
# 4 Jul at 6:05 pm
You don’t know me but I pray that your little darling comes through this fitting fit and it sounds like you have the strength & love to help her do it. I’m from farnorth of NZ(kaitaia) and have a son 15yrs with SSHD.
Take care. Trish