This morning things were looking very bleak. Last night Angela was unable to tolerate feeds and also lost her last possible peripheral IV line. The doc came in and said that she needed a PICC line and TPN to give her nutrition as she has not eaten in over a week. After some discussion I asked if we could give it one last shot at the GJ tube placement and he agreed that it was worth a last shot.
We took Angela downstairs to international radiology where they tried to get the GJ in. After about an hour flipping her all around in various positions he was able to break through her pylorus and get the J portion of the tube nicely into her jejunum! Everyone in the room was so happy -- but not nearly as happy as Angela and her mommie!
So today we have begun to attempt feedings into the J. We know her belly is still fast asleep and is not working right now. So far her J is doing better but now we are having some pain and issues. Currently we are at 30ml/hr of pedialyte and things are starting to back up. We are giving her some time off and then we will go at it again. Once she can get to 40ml/hr we will switch her over to half and half formula and pedialyte.
Poor girl. She is really struggling. Her skinny bones, heart rate and floppiness show a little girl with no nutrition. We really need this to work for her. We all know it will eventually and I've been assured that this does happen after surgery for some kids, particularly those with neurological issues -- but it's still hard to watch.
Speech came by this afternoon and also reassured me that many kids need to relearn their swallow after the fundo, but that they have seen many success stories. Unfortunately they can't really work with her until she is up to full feeds. I'm hoping to at least connect with them before we leave since we do not currently have a feeding therapist at home. Once we are discharged will be be looking for a program to start, maybe at CHOP where we get her PT.
Thanks for praying us through this. We are all doing just fine -- just very tired and ready to continue on with life. Adam and Madison will stay the weekend here at the Ronald McDonald house until we go home.
Never Lose Hope.
Never Lose Hope.