It’s a hard day.
We are back in the PICU. She had some spots of collapsed lungs in her xray this morning, and was continually dropping her sats, so they made the decision to come back to the PICU. Thought is that they can have better, sooner meetings about her care down here, and have all the “big guns” (my wording) to meet and talk about Annabelle and how to get her past this.
Plus, we put her back on vapotherm to help open her lungs back up. I really think once we get them “dejunked” and opened, she’ll be able to do better.
They will be meeting soon to make decisions about her care, most importantly whether we
- Do the diaphragm placation surgery (there are pros and cons to having the surgery done, but she definitely has a paralyzed diaphragm.) We aren’t sure this is the problem or how much it is contributing, but it is definitely possible that it is contributing. But it’s also possible that she will grow out of it.
- Keep her here and keep trying to get her off of oxygen or
- Get her stable on oxygen and send her home with oxygen.
Maybe there are other options, but those are the ones I know of at the moment. There are lots of discussions to be had.
They usually don’t send transplant kids home on oxygen… because they usually don’t need it. And it’s a pain in the butt, to be honest. But these are all decisions that need to be made, and there is no right or wrong answer.
Please be praying as we listen to all the different doctor’s opinions, and that we can most of all make the right decision for Annabelle.
On a slightly positive note: Annabelle is doing well! She was smiling and making fun noises with her mouth (she’s found that she can cluck and make kissing noises and thinks it is OH so funny!)
Your continued prayers are appreciated and coveted. Thank you SO very much for walking this journey with us in prayer. I can’t tell you what it means to us. I have a lot more I could say about this… but I’m emotionally spent, so I’ll save my thoughts for another day. But most importantly: God is still with us. And God is still good.