Lyla had a good day yesterday, but was not able to breathe on her own during the fluoroscopy to check her diaphragm. They think she was just on too many sedative drugs (precedex and morphine). They were able to get a feeding tube placed correctly and also did a chest CT to get a better idea of what's happening in her lungs.
The CT showed heavy opacity in Lyla's lungs. That means they are so filled with sticky mucus that they can't even get a good picture of the. And there's certainly no air in there. I was upset when I heard the news because they have been doing nebulizer treatments, medi-nebs (a shaking treatment) and cough assist (a vacuum machine) to loosen and help Lyla clear her lungs. The CT basically said none of that is working. Lyla was comfortable, but I went to bed very worried.
Thankfully, Lyla had a great night and Steph, the overnight nurse, was able to suction out "rivers of mucus". I'm hopeful that all this stuff is finally loosening the junk and Lyla will finally get some relief. Because they have backed off on all but one of the sedatives, Lyla was a little bit awake this morning and I was able to talk with her and look into her eyes. Our previous experience was that she could be intubated and still be awake. I was upset that I couldn't communicate at all this time. They have to keep her sedated this time so she does not pull out the tube. It was hard to convince myself that she was ok until today when I could finally connect with her. She was looking at me and knew I was there. She held my hand and followed my face. We even watched TV together. It was only for a few minutes, but it made me feel SO much better.
Lyla is going down to re-do the fluoroscopy in a few minutes. Cathy will be turning off the propofol completely on the way downstairs so Lyla will be awake and able to get breaths on her own. Even this am on the drug she is breathing just above the ventilator. Am hopeful it will go well.
Thanks to Lisa for visiting on behalf of the Edgewood team. It was great to catch up last night and Lyla loves her balloon. Always good to see Sabrina and Matt too. Even though Lyla can't have visitors because of hospital policies, we know everyone is thinking of us. We are excited for Uncle Ryan and Aunt Emily to visit this weekend after we finally got clearance from the nurse manager and social work for them to come up.
I'll repot back when I can. Until then, pics below! Lyla's rockin' her tiger dash afos two hours on, two hours off. Sara from child life brought her a new baby doll for medical play. Hello Kitty has joined Unicorn in the balloon corner, and Lyla's room is now decked out for St. Patirck's day (we've got a great view of w. 7th for the parade, but hopefully we're not here that long). The grey bumps on the ventilator screen are the breaths Lyla takes on her own.
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