Big day – today we are going to do our bronchosopy and try bolus feeds.
The doctor said if the bolus feeds don’t work, no one is to be disappointed because sometimes it takes several tries before it’s successful. If this time doesn’t work, we’ll try again around Labor Day. Wow. This is a very conservative doctor. So we’ll see how it goes. I had the PA double check and they only removed the fundus from her stomach, so we should have the capacity to handle the increased volume, but will her tummy want to? Now that’s a different question.
They want to get her off Lasix sometime (not today) and start her on Diurel. It’s less effective, but also less toxic on the ears and kidneys. So we’ll see. We have been on Diurel before, but never without lasix.
The Bronch is this afternoon. That will tell us a lot.
After the hearing test on Monday, the doctor wants to remove the PICC line. Since there are no other tests or needs for IV access anticipated, the risks will begin to outweigh the benefits of the PICC line. I wish they would leave it till we left, but I think I’m going to lose that battle.
So, then the question. What stands between us and going home? Weight gain. She anticipated 2 to 3 more weeks – ugh! She wants 5 to 7 days where they don’t have to do anything to her. She wants her to be 6 kg. We are 5.1 today (she gained 0.06 kg last night!)
Finally, though, doctors are talking to each other and we are about to hand out the boxing gloves. Pulmonology wants to wean the vent more. Critical Care wants her to grow to like 8 kg before any more weans. Critical Care will decide when we go home. But the CC doctor admitted to me that Pulmonology will ultimately win because she’ll be outpatient and then pulmonology will be the ones following her. So, craziness. Ultimately everyone wants what’s best for Bella. They just have different strategies to get her there.
We will continue to pray that her Dr.s will know what to do for her. You're doing great little Bella!
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