Hello all,
Ruby's night last night was a bit rougher than her day. She did have a few episodes (2, we think), one right before we left for bed. The one we witnessed she was about to get out of without too much intervention. When we came to see her in the morning the nitric oxide was back up to 20 (from 3, but the increments are usually 20, 15, 10, 5, 4, 3, 2, 1, off), the ventilator PEEP was put back up, and her epinephrine was back up a bit.
We haven't seen the surgeon yet today, he is doing another operation but should be in to check on Ruby after that. We moved rooms! which is a good thing, we are down the hall a ways. The room that Ruby was in is a special room that can be converted into an OR when needed. The fact that we moved is an indication that they no longer think she is at risk of needing immediate surgery. It is a bit louder where we are now (we were at the end of the hall before) but we are still taking it as a win. The plan for today is to try weaning her off the nitric oxide and lower the epinephrine as needed. They are also trying one of the pulmonary hypertension drugs that they stopped using on Saturday and have started back some feeds. It is mostly just to test to see if her stomach is absorbing anything now that she is off the vasopressin that slowed her bowels down. She did have a small bowel movement yesterday, which is promising.
She is still 'awake' and wiggling which is nice to see, she is sticking her toungue out too and that's a very Ruby thing to do. The other side of that is that she isn't very happy. She looks pretty uncomfortable and sometimes it looks like she is crying, but can't make any noise because of the ventilator. It's pretty hard to see, but we know this is better than being fully sedated. We also know that she won't remember any of this.
Please keep praying for our Ruby, it seems like she has made a turn yesterday so we hope that that continues as she is weaned off all the medications and treatments ❤️
