I apologize for not updating during the past week. Sometimes it is hard when her status changes so quickly. For the most part she seemed to be doing better after the vent changes last Monday. She would sometimes get down to the high 50's in her O2 needs but would bounce right back to high 80's. Her O2 requirement seems very positional and possibly due to her large air leak.
Over the weekend they tried to change her diuretic again. They overlapped with Lasix but it still did not work. She once again has very wet lungs and is now on twice a day Lasix until that resolves. The past few days have been higher O2's again, sometimes getting back to 100%. There was a disastrous blood gas but that was blamed on the diuretic issue.
Tonight I went in hoping for snuggles but found Natalie to be running a fever. She tends to be a very hot baby normally, but this was above and beyond her norm. They ordered a full septic work-up and I waited around to see what came of it. Her white count is a little elevated, but no bands. Her CRP is 17, so a bit above her normal baseline of 2-5. As I was driving home I realized they did not check her ears, so I will call to remind them. That is a bigger baby issue and tends to be overlooked as a possible culprit. Maybe something brewing, maybe not. She is on IV antibiotics until the cultures come back. It was so hard to leave. She was at 100% and just not sating very well.
Tomorrow the attending is talking to pulmonology and ENT about possibly getting her a cuffed trach to manage the air leak. It will take time to arrange that even if all parties are in agreement. The hospital does not stock them and it needs to be sent in.
I am exhausted on every level. It is 3am and I need to get to bed because there is a certain preschooler who will be up before long. I just wanted to ask for prayers and some positive energy. I am doing my best to bring a happy face to her bedside and think that is what I need myself. I need to feel motivation rather than frustration.
I have nice stories of happy snuggle time with Natters and happy birthday celebrations with Annie but that will have to wait. For what it is worth, Natalie looks good and has been pretty comfortable. She does not look as though she is sick, so hopefully this is a blip and she will be rocking the under 60% FiO2 again very very soon.