After rounds today they decided that they will extubate her, take the breathing tube out, today. This was confusing to me at first because her lung is looking worse. They said that her heart function is handling everything fine so they just need to give her time, like any kid would need time, to recover from an illness. She was well compensated before she got here so they believe that she can get well on her own and her heart will handle it fine. They also said all the things they have done can actually make it worse – the PICC line, arterial line, the breathing tube, the sedation is all not helping her.
I still have some more questions about how this unfolded.
Hana is a real fighter so this may be a better course of action for her just getting better on her own.
The lingering question that will need to be answered is the one that is always in the background – does this mean it is time to list her for transplant? If this is what happens every time she gets rhinovirus then I think maybe it could be time. The heart failure/transplant team said they need to get together and have a serious discussion amongst themselves soon.
So, the x-ray looks a little worse but listening through stethoscope she sounds better. They said the x-ray can “lag” behind what is actually going on. They stopped her feeds so that her stomach is empty and they can do the extubation today around 3pm. I was talking with the night nurse last night and she was telling me that often when they put in a PICC line or a breathing tube that there are only two people at bedside. With Hana there are usually about ten. This makes me nervous and just reminds me how delicate and careful they need to be with every move they make.
Let’s visualize a successful extubation today and clear lungs soon!