STILL in ICU

I'm wondering how many more posts I will have to label this way :(
We had a pretty good weekend here. Ry's sats were holding steady in the mid 70s with Liters of oxygen and her desatting spells had withered to only about once every 24 hours. We would bump her oxygen flow up a bit to get her through the spell, but she could always work her way through it and then come back to 4L and hold steady. Sunday we were thrilled and ready to move up to the 8th floor. We hoped a few more days of slowly lowering her flow and some time to be trained for the care of her PICC line and we'd be home before long. Rylynn was not happy about that plan.
We moved up to the floor after lunch. I did not want Rylynn to get the impression that we were leaving, so I honestly told her we were moving to another room like the one that had the cowboy hats. The eighth floor has boots, cowboy hats, etc on the walls and floors. Well, we took one step into our room which happen to be outfitted with stars instead of hats and she was not happy! Anyone who knows Ry knows she has a mind of her own! This was the beginning to a terrible evening. Her sats dropped, and even after being put on 9L of flow with a vapotherm machine they would come out of the low 60s. By 10:30, although there was slight improvement, we were re-packing all our snacks, clothes, toys, and DVDs back up for a move back down to the ICU. We walked into our new ICU room around 11:00 and her sats continued to improve. Within a half hour she was back to holding steady at 73 and playing with her new ZhuZhu pets with the nurses! We can't clinically say that the move is what caused the change but the Doctors do throw around the term "therapeutic move". Either way it was a VERY late night / early morning!
Today was a good day. Her sats remained in the mid 70s with no spells. An echo showed mild improvement to her heart function. And labs continue to show a slight improvement of her liver, kidney, etc. from last week.
We are definitely on the right path, but we have some more exploring and tweaking to do. Rylynn in scheduled for a heart cath sometime on Wednesday to check for capillary formation and to check the pressures of her lungs to see if this can explain the drop in oxygen. There are always risks to her going under anesthesia again so I ask for additional prayers for her as she undergoes this procedure. And please pray for the wisdom of all those who care for her daily here at Children's. This is truly a team effort to get these little ones taken care of.
I am going to try to get a little sleep. I'm thrilled to be climbing into this vinyl pull out couch before 2am! I am hoping for a peaceful night.
I'll update again on Wednesday.
With love . . .