What a wonderful weekend home. Feeling normal and feeling extremely optimistic about Bea’s recovery.
and just like that, we are back at the hospital for another 7-10 days.
We went to our pediatrician Saturday and she heard a heart murmur. We were scheduled to come get an echo done Monday afternoon. Aside from that, one of the biggest indicators if the surgery was working or not was the color of Bea’s stool. Green = good. White = bad. Sunday…we had a lot of white and called Children’s who then told us to come in Monday morning to get labs done.
The results came back Monday afternoon and they said they needed to readmit her for another 7-10 days. Here is the breakdown of what they are thinking….
Option #1 – She has an infection called Cholangitis. They will be treating her as if she has this by pumping her with antibiotics. If by the end of our 7-10 day stay, her stool goes back to being green…then they know it was an infection and that it was successfully treated.
Option #2 – The effects of her surgery haven’t kicked in yet. After monitoring her for 7-10 days, they will send us home regardless of seeing an improvement in the hopes that over the next 3 months it begins to work.
Option #3 – The Kasai didn’t work. If after 7-10 days her stool is still white, they send us home in the hopes that it eventually turns green. After 3 months if it hasn’t turned green and her direct bilirubin is still high, then they assume the surgery didn’t work and we move forward with next steps for getting on a transplant list.
On top of all of that, they found that the murmur is the result of a hole in her heart. We are waiting to hear next steps from the doctors tomorrow.
Needless to say, the last couple of days have been extremely tough but we are confident in the care we are receiving here at Children’s.
I truly feel we are due for some good news so stay tuned.