Livi has been hospitalized for 4 weeks now. We are past being sad about it and working our way through the fatigue. Luckily, we have amazing friends and family who make our otherwise impossible life not only do-able, but really enjoyable. If I say thank you again, is that overdoing it?
The beginning of last week was a difficult time for me. After being extubated and reintubated on Saturday, I did not expect her to be doing worse on the ventilator by Monday. As previously explained, that was due to the collapsing of some of the smaller sacks of the lungs. Even still, Monday and Tuesday I was concerned that she was actually going to get well. She looked more tired and exhausted than before and was not fussing around as much (something I usually take as a sign of her personality shining through). Wednesday brought some relief in this area. When I went to see Livi she was fussing around and opened her eyes and turned her head to my voice. With all the sedation her eyes were still pretty googly, so I don't actually know if she could "see" me, but she knows I was there. Since Wednesday things have seemed mostly better. Of course, most days things go up and down and you end up about where you started, but it seems the last few days that she is making a run for it again.
Her daily x-rays show that her lungs are popping back open where they had collapsed...she is getting a little food again (last week her stomach wouldn't properly digest any food)...she is getting fewer sedation meds...they are turning down settings on her ventilator daily. She has had two fevers the last two days, but we're pretty sure its from a UTI (waiting for cultures to finish growing out). There was a question of her having a pretty concerning stomach disease that affects proper digestion, but they did a test yesterday morning that shows her stomach is working well-- thank you, God. This illness is SO out of the ordinary for us that I asked a nurse I had grown to trust how concerned the medical team was. She assured me that kids with chronic lung problems have this much trouble reasonably often--I just hope this doesn't turn into our normal.
All in all things seem to be looking up. Maybe we'll have some good new for you in a couple of days.