From yesterday (BIPAP)
From Monday (BIPAP)
Mallorie turned one year old on Ash Wednesday, two years ago. And then had a routine cleft palate surgery, and had complications, and spent a month in the same hospital where we are now, mostly in the PICU. So this is what I will be claiming today, because I keep wanting to recall that hospitalization, and although I learned some valuable things about Mallorie during that stay, ... that was then, and this is now.
Do not call to mind the former things,
Or ponder things of the past.
Behold, I will do something new,
Now it will spring forth;
Will you not be aware of it? Isaiah 43: 18-19
Mallorie had the tube put back in her throat last night, at about 11:30 pm, and was put back on the ventilator. She had been having a struggle breathing for pretty much the entire time she was off of the vent, and no one is sure if what was going on was seizures, or not, because she would be fine for a period, and then really struggle breathing for about a minute, then calm down again. Yesterday morning, I began timing the events, and they were happening every 5 minutes, like clockwork. So she is back on medications for seizures, and will go home on them, which is completely fine with me, now. It may or may not be something she needs in the long, long run, but it sure doesn't make sense to not eliminate that as a possibility while the goal is getting her breathing easily on her own. Last night, before they put her back on the vent, her color didn't look good. When I went back to see her after they had her back on the vent, it was easy to see that the decision was right (not that I was questioning it at all) - her color was great, and she looked so peaceful.
She's not been receiving any feedings while she was off the vent, because of not wanting to have her aspirate while she was struggling so much to breathe. Now that she's back on the vent, they just restarted her milk feedings, and I'm happy about that. Good nutrition seems like it would help make her stronger. .
Not much else to share today. She just looks more rested right now. They plan to feed her a bit, and then try testing her response to changing the settings on the vent - probably not till tomorrow, though. They plan to watch closely when it's time to take her off the vent next time, and maybe even have an EEG going on at the time. We'll see.
The Trisomy 18 Connection
1 month ago