Today’s plan is to try to wean the NO and increase her feedings.(slowly! on both)
They have decided that this was not a pulmonary hypertensive crisis, but probably some bug. Amazing that a bug that didn’t even show up on the radar with anyone else that has been around her, almost killed my baby. Poor sweet girl.
The doctor says she needs 7-10 days to recover from whatever it was before her surgery. Our fellow is about to pass his boards for anesthesiology (he has been wonderful with Bella’s current state) says that an anesthesiologist wouldn’t do surgery on her till she was weaned from the NO – hence that directive. So the plan is to try and schedule the fundo, g-tube, and trach next Tuesday or Wednesday if possible. That gives her time to recover and get some reserve built up.
My major goal on Sunday (Jason was here and I was at home) was to find someone to watch my other children. My sister-in-law has been watching the girls. We are so grateful, but this has been ongoing for a very long time. Since we aren’t going home any time soon, we needed to find something fairly permanent. I approached two ladies. Let’s be honest, I was begging. I came home so sad. I knelt and prayed. There has to be someone Father. There has to be someone. I called my Mom and we talked (again) about every different situation we could come up with. And then Mama had a thought. There is a girl home from college – doesn’t have to go back till the end of August. She called her. Then she called me. The miracle is that she was praying for a nanny position for the summer. A double blessing – 2 prayers answered. So long story short – she will be living at our house Sunday night through Friday afternoon. She will watch over and love on my children. There will always be someone there. Now if I need to go in early or late if doesn’t matter. She can stay with us till the end of August, so when we go home and we are trying to get used to living with our new medical reality of a living room turned into a hospital room, I will have help. Did I mention that she has experience with DS and already knows my Joy? We are truly blessed beyond measure. He is mindful of us!