Sorry to leave everyone hanging regarding her biopsy results but they didn’t call until late Friday afternoon and then it was the weekend…and….and….(excuses, excuses-thanks for reminding me I needed to update this Heidi). Her rejection score is a big whopping 0! That makes it nearly two full years without rejection! I don’t have all the official results back from her stress echo but it looks as if she’s clear from coronary artery disease as well.
There are still some decisions to be made about her main medication; will we switch back to Cyclosporine and hope her appetite and general health/weight gain goes better or stick with Tacro? Although she is gaining weight and looks much chunkier she is only 3rd percentile still for her age and is hanging onto that growth chart by a fingernail. That’s with me making sure that EVERYDAY she gets a 1000 calories and really, who’s kid ever eats the same amount consistantly?
We should be free from clinic visits for three months but we go in for labs tomorrow partly because some of her lab results from Thursday came back strange and partly because I forgot to hold her morning medication on the day of her surgery. In all fairness, it was 6:45am, I couldn’t drink any coffee in the pre-op area and the anesthesiologist told me to give it to her. In the back of my head it felt wrong but the cobwebs were too thick so down the hatch it went.
I’ll post more as it comes.
Wow … I just read through most of your site and wanted to thank you for sharing your incredible story. We, too, are traveling down the CHD path with our son, Luke. He is 17 months and has undergone 2 of his 3 open-heart surgeries. He has had the PA banding, like Zoe, and had the Glenn last August. We are expecting his Fontan to be in the summer of 2010. The other thing we have in common is our heart surgeon! Dr. Cohen has performed both Luke’s surgeries, although our ped. cardiologist is in Tacoma. Have you ever attended the CHD support group at children’s? My husband and I feel deeply connected to other families who have walked our road. God bless you and your ministry through this web site!
Love, Jesse
Jesse
June 26th, 2008
congrats on the successful biopsy!
Speaking as a chronic dieter myself, did you ever think trying to hit a 1000 calories a day would be a challenge for anyone!??
Hope Z has a great and healthy summer.
S
Sadaf Trimarchi
July 1st, 2008