Better than Expected
Today’s transplant appointment went much better than I had expected. There was no G tube fight. Basically both Mike and I misinterpreted the nurses message. Basically today was to tell us what was discussed at the meeting yesterday, and what needed to happen to get our little Rock Star listed and on to the next chapter.
So basically what happens at these meetings is each of the Transplant cardiologists presents their cases. So Dr. Blume presented Katy to all the other members of the team… surgeon, fellow cardiologists, nutrition, GI, Social work etc. etc. all those people that I told you we had previously had to meet with before listing. They then review Katy’s story… and based on numerous statistics they place her on the chart as to how successful transplant will be for her.
Basically there are two ends of the spectrum; on one end is the kids that bounce back quick, minimal complications, are off playing soccer within the year post transplant. Then there is the other end of the spectrum which is sadly the kids that don’t even make it out of the OR. I am happy to report that Katy is on the soccer playing end of the spectrum. Given her history, how well she is doing and responding to medicine, the fact that she has had NO previous surgery, kidneys are great, liver is great, developmentally she is great, she is well vaccinated, our lifestyle etc. makes her a lower risk therefore a great candidate for transplant.
Once that is decided they look to see if and when a transplant is needed and based on Katy’s non growth and the pressures and structure of her heart. Yes, a transplant is the best course of therapy and sooner rather than later is the way to go.
It was also decided that although we all seem to agree that Kathryn will not gain any significant weight until she gets her new heart, a few extra pounds wouldn’t hurt to help with her healing post transplant and to help keep her as healthy as possible while she waits for her gift.
So, it was agreed that we would admit Kathryn for 5 days to Children’s for an NG study. Using the NG tube to feed overnight to see if the added calories will increase Katy’s weight. If that does in fact work, we will then look at the G tube placement again once we have some data. During that admission we will do all the necessary paperwork to list Kathryn.
Thank you for your continued love and support! We could not do it without you. Admissions are hard on all of us, but they are becoming especially difficult for Kathryn.