We were very happy for Piper to come home on Friday after a night in the hospital where she recovered from bad diarrhea caused by C-diff. C-diff is a bacterial infection which causes severe diarrhea and abdominal pain. Ironically, the C-diff was caused by one of her anti-rejection medications called Cellcept. She is now off Cellcept and is taking an antibiotic to treat the C-diff. The doctors at A.I. will see her again today and make necessary adjustments to her medications once they get her blood results.
She had a good weekend minus the re-insertion of the feeding tube, which feels a bit like torture to everyone involved. Then, once we got it back in, the stupid feeding machine would not work properly and the alarm would go off every 30-40 minutes while she was asleep, so we finally just turned it off. After making an adjustment to her formula, we finally got the machine working again last night. If the formula is too thick, the machine just can’t handle it and it gets all clogged up. As a result, I thinned out the formula. It’s not as much formula as the doctors would like, but it’s better than nothing!
It’s fun to watch Piper without the feeding tube. She eats so much better and I’m really hoping we can get rid of this stupid tube very shortly. She hates having it in and she hates eating with it in because the food touches the tube on the way down and she doesn’t like that feeling. It also sucks because she wakes up completely full after a full night of the tube feeding her, so she won’t eat breakfast with her sisters. I feel like she would eat as much as we’d need her to eat if we could just take the tube out for a few days.
I will never forget having a child with a feeding tube. It may be the worst part of all of this believe it or not. We can handle all of the other stuff. Kidney failure, transplant, medications, but for some reason, the damn feeding tube is just the straw that breaks the camel’s back. I can’t wait to get rid of it!
Everyone else is good and healthy. Sophia and Harper are doing great and we are just dealing with some normal 4 year old behavior (sleeping in our bed A LOT). Harper continues to grow and develop and she is a really cute little girl. She always brings a smile to my face!
Thanks as usual for all the love and support. Things are going well and the kidney is working great. Just gotta keep all our people healthy and germ free.
Love – Chris and Erin
One thought on “ONE MONTH POST TRANSPLANT UPDATE”
We are so thrilled that things are moving along so well. Glad they found the cause of the diharia(spelling!) Yall are so brave… Love Marguerie
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