It's All About What You Know

Let's start at the beginning. Today was a great day. Jaisal slept amazingly well last night (even allowing me to work on Christmas decorations for our room in the middle of the night).  We took the face mask off around 6:30 am and put it back on...wait for it...keep waiting...no really, keep waiting because we haven't put it back on yet!!

I was nervous in the morning because Jaisal's breathing looked labored, and I thought maybe we'd pushed him too much yesterday, but by late morning he looked very much at ease. We reduced the flow of his oxygen through his nasal support and somehow he looked even more comfortable. Then bedtime came around and we wondered if he really needed the mask. Not willing to make the decision ourselves, we paged the fellow and she was game to try letting him go the night mask-free. Fingers crossed for an uneventful night!

You might be saying, wow what a turnaround from the gloom and doom from a few days ago. Well it is, but mostly because we weren't getting the whole story a few days ago. Despite the fact that Jaisal is seen by numerous excellent doctors each day, the fact of the matter is that there are only 3 doctors in the hospital that know their business regarding liver transplants. None were on service this week. That, my friends, is where this misadventure in information begins.

One of the first things we asked for after learning of Jaisal's diaphragm paralysis was a surgical consult. We were told that no surgeon other than Jaisal's transplant surgeon would do the diaphragm plication if that became necessary. That meant our consult would have to be with Dr. S, who we really like, but is impossible to pin down. After days of asking for him, he showed up today while
Kirk and I were at the Kohl's House eating lunch. Although Dr. S tried to leave before we ran back to the hospital, my parents and our excellent nurse strong-armed him into staying.

That made all the difference in the world. In 5 minutes Dr. S was able to completely ease our minds about the diaphragm issue. Jaisal's right diaphragm can't move from where it is because Scott's liver is right underneath it (Scott, your liver is so inconsiderate). Dr. S showed us the x-ray and it was so clear why Jaisal's right lung can't expand.  There is a liver directly below it leaving no where for the diaphragm to move. Accordingly, it appears paralyzed.

It likely will take 2 months for the liver to shrink. If after that Jaisal's diaphragm still can't move, well then we may have issues, but until then there is nothing to be done. Dr. S said kids' breathing issues typically passed as they got stronger and that he has not needed to do a plication in 11 years. How none of the other doctors could see the liver or offer that explanation is beyond me. Particularly considering the anguish caused by their explanations. Nevertheless, we talked to the guy, and feel infinitely better about Jaisal's prognosis.

There is talk of moving us up to the floor this weekend and discharge by the end of the week, possibly sooner. What a whirlwind this week has been. Thankfully the twists and turns finally appear to be in our favor.