Our child had a miserable day.
Let’s get the good and bad out of the way so we can focus on the “OMG, that totally sucks.”
1) The Mic-Key to Mini transition seemed to go well and Leah is already feeding through the new tube.
2) They were able to wean Leah off the vent immediately after the procedure, so she just has the cannula in.
3) Leah is probably going to win that little photo contest. She is a star. Not gonna lie though – there are an awful lot of other beautiful babies there. She has a lot of competition.
1) The kid had a craptastic day and it took Tylenol, morphine, Ativan and then more morphine to get her to sleep. And that took ALL DAY and every magical mommy trick in the book.
We went back and forth on this with the anesthesiologist’s team and had agreed that her last feed would be at 5AM since they were taking her at 9AM – but then they changed it up in the middle of the night because they thought they might take her at 7AM, so her last feed was at 2AM. And of course they didn’t take her until after 9, so she did not get to eat again until about 1:30 in the afternoon – nearly 12 hours later. And we know this kid does not like to be hungry. So she already had a head start on the road to Crankytown. They replaced the g-tube and it looks a lot better, but it probably doesn’t feel very good. They also did a bronchoscopy AND had her on a breathing tube. If you’ve ever had an endoscopy you know that your throat feels lousy afterward. Her throat is swollen and her breathing sounds horrible – and she has the suction tube rubbing against her irritated throat and SUCTIONING against it. Would you be able to sleep? We tried eeeeeeverything, all the magical mommy tricks, but she would drift off for a couple of minutes and then remember how uncomfy she was and get cranky again. After a while we asked for some Tylenol, but that didn’t seem to help. A little later we asked for something stronger and they gave her a baby dose of morphine. That calmed the hoarse, sad little cries, but she still wasn’t sleeping. They gave her some Ativan later in the afternoon, and even after that she didn’t fall asleep. After an appropriate time they gave her a second dose of morphine and she finally drifted off to sleep. She’s been asleep for maybe 5 hours or so and I’m hoping she will sleep through the night after such an exhausting day. I can still hear her sad little gasping from the other side of the room.
2) Leah has mild tracheomalacea – her trachea is a little bit compressed and not fully hardened, but the doc doesn’t see it as clinically significant. My understanding is that kids usually grow out of this condition.
Now, “OMG, that totally sucks”:
Leah’s gap is longer than they thought – about 6-7 vertebral bodies. That is really long. The surgeons here no longer feel confident that they can do the Foker procedure on her, and whatever they do they want to delay the repair until she is older – possibly 8-10 months or more.
We talked about some of our options today and they are conferencing on her case next week with some other doctors. I want to hold off on getting into too many technical details until they’ve actually given us a solid set of options. But suffice it to say that our near future just got a little more complicated.