Mallorie's tube was taken out today, and so far she is still that way. She had a bit of a rough time initially, from a swollen airway, and has needed some epinephrine breathing treatments, and has been on BIPAP almost the whole time since she got off the vent. When the mask slips, she can have trouble breathing again. But when it's on, she seems pretty comfortable. She is still rather sedated, and the neurology team thinks it's because of how long Phenobarbital stays in the body, besides the fact that they are still slowly weaning her off the meds, rather than abruptly stopping them. In a way, the lingering sedation is a blessing, since the airway swelling meant she had to have the BIPAP support ... and BIPAP does not look terribly comfortable to me.
Annabel's mom mentioned something about BIPAP or CPAP and watching for air leakage drying the eye out. It probably would have been on my mind already, but for sure, with her warning, I've been a tad obsessed. One nurse had left me a bunch of strips of Duoderm (an adhesive patch type thing) that she had cut for me to use, and we're using those to keep her the right eyelid patched.
And I'm a bit sleepy tonight. I stayed up till 1:30 last night, talking to another mom whose son was having a bad time, and is also on a vent. It was a pleasure to just sit with another mom of a child with extra needs, to know we both understand the sorts of things she needed to talk about. And it's a happy thing today to know her son is doing "a little bit better." When I listened to her talk last night, I listened to a story of a young man who needs lots of extra help with things other children can accomplish on their own, but it doesn't sound like he feels badly about his life. He's a joyful young man, and has a wonderful sense of humor. And is a bit spoiled, his mom admits. :) I so much want her to continue to have the joy of his presence in her life, and am praying for him today. But that's why I'm tired, and I hope this isn't too scattered.
Mallorie's new roommate has a couple of infections that are both very serious for little ones, so please pray that the infection control measures (hand washing or sanitizer, gowns) work well to keep Mallorie from contracting anything new, because apparently, neither Mallorie nor her roommate is going to get a private room. And all of Mallorie's cultures have come back negative for whatever they tested for. They are thinking (I think because of the CT results?) that she had a sinusitis that just wasn't clearing up, and that's what led to all of this.
No more seizures, tube out still, and maybe (?) will resume feedings tomorrow. She was scheduled to go have a PIC (IV) line placed tomorrow, which is procedure which would require her to be reintubated! But her IV that was placed in Beaumont is still in place; they had just had some concern because it had started bleeding at the insertion site a couple of days ago, and they wanted a really good, reliable IV at that time. But since now she's at a point where she's off the vent and all her meds that she is receiving can be switched to be given through her feeding tube, I am praying that they just decide to wait on that plan.
The Trisomy 18 Connection
1 month ago