Our sweet Abby girl is in kind of a rough place, where the doctors don't seem very sure of what is going on or what would be the most helpful for her. She's had a few more "events" that thankfully were caught before they became life-threatening. It appears that when she gets overly worked up, she either holds her breath or her airway closes off, and she stops moving air altogether. It's the same sort of thing that she did the day before her g-tube surgery, but the episodes are becoming more frequent. They currently do not know what is causing this or how to avoid it, but are working on a plan. Part of that plan involves dong another examination of her airways. When she had her bronchoscopy done a week and a half ago, the pulmonary team was unable to complete their scope (due to her desatting and needing to be intubated) and didn't get a full picture of her airways. So, the next time they extubate they may do so in the OR in conjunction with trying another scope. They are also talking about exploring whether or not there may be a neurological component to the episodes. What the team does agree on, is that the issue seems to be multi-factorial and that while they will look for one, there may not be a clear cut answer. Until then though, she has to stay sedated so she doesn't constantly gag on the endotracheal tube or get herself so worked up that she stops moving air again. Seeing her sedated for so long is very hard on us.
This week, just looking at Abby has made me cry. She looks better this afternoon now that some of the swelling in her face has gone down, but for the last few days she has looked more like the baby we saw a few hours after birth, not the spunky Abby we've gotten to know over the last 16 weeks. I'm thankful that she's starting to look a little more like herself again, and I pray that things start to improve so we can begin attempting to collect answers and hopefully hold our baby girl again soon.
Watching, waiting and praying with you.
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