I was right about the long night! Elizabeth had a few times of desaturations and got as low as 77. Her blood gases were all over the places and we had to get very mad to get all the Drs in here to discuss a plan. She has been paralyzed and sedated throughout all of this. But they decided to change her fentanyl drip to morphine,since she has been on it for so long maybe she was used to it and needed a change in meds to ensure it was working. They decided to do blood gases every hour overnight and changed it to every 2 hours this morning to monitor her oxygen/CO2/Oxygen index number.
Just so everyone understands what the critiera for her going on ECMO is, they are monitoring her numbers but the main one they are looking at is the oxygen index. A number of 30 or higher in 2 consecutive gases would be the point that they put Elizabeth on. She spent the majority of last night anywhere from 20-29 and at one point was at 44. Today she has been in the 20s and on her last one was at 13. We REALLLY hope she can keep good numbers and avoid ECMO since it will significantly decrease her chances of coming out of this.
They have stopped feeding her and she will again get TPN fluids/nutrition via IV. She is still on 3 antibiotics and 1 antifungal medication. Plus the morphine, versed, and the paralying medication. She is still getting her home medications: steroids, sildenafil (for her pulmonary hypertension), lasix (dieuretic), vitamins and prevacid/pepcid to protect her stomach from the steroids.
The Dr just came in and talked to us, it is very scary when he tells us they are doing everything they can. And she is probably the sickest kid in this hospital right now. That does NOT make me feel any better about the way things are going. I wish we could do more and make things better.
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