~ERYNE UPDATE- Kimber Shan, Erynes mom posted earlier this morning, Ill take the evening post tonight. Eryne had to go back to the OR today to fix a mistake that is a little hard to believe. A travel nurse yanked (literally) out one the lumens off Erynes triple lumen catheter. Jordan had several of these, both at home and the hospital and I know how incredibly hard it would have been yanked to get it to break. It is a miracle nothing bad came from it! The nurse, a travel nurse was very sorry but...back to the OR, back to being sedated again, another small setback. (WHEN will it end?) Another mistake was made last night that has me personally concerned. Someone gave Eryne an large dose injection of long term insulin which cant be counteracted. It could have killed her. Her blood sugar this morning when family came in was 40! Jordan had the same thing happen at Baylor, Eryne is at USC Keck in LA, not the hospital Jordan was transplanted at. Its a good reason why Kimber had to lose her job to be able to be with Eryne. No one can take care of a child like a CF Mom. There is good news. Provided everything is still going well Monday they will move Eryne into the rehab unit at the hospital. Its great news! Eryne will have intense three hour per day sessions to help her come back from this are you kidding me fight. She is a warrior and a Hero. I am diligently researching, at this time I cant find anyone else in the United States who has been transplanted with a LAS score as high as Erynes. the brain issues had nothing to do with the transplant per se so it could help other CF patients get transplants who havent been offered them because of their high scores and severity of illness. If anyone knows anyone else who had an LAS score of 95 or high AND was transplanted please let us know. The highest possible score is 100. Thank you from Eryne, her mom and dad and family and from our family for all the amazing things you have helped her family do. They could not have done it without us becoming a CF Village and working together. May all of you be blessed in return somehow. And, as always, thanks to God, the one who holds us in His hands and helps us walk our Journeys. Eryne is a testament to God and many, many people. I long for the day, before Christmas is my prayer, to see Eryne walk out of the hospital! #HomeForChristmas
Posted on: Sat, 22 Nov 2014 03:02:13 +0000
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