Transplant is amazing and while kourt is getting to do things she has never done before this is a treatment not a CURE. Most people think ….oh well she got her Transplant she is all better and ride off into the Sunset. Maybe in Hollywood where people come out of the OR with one IV and breathing their own. This is not how it really is. Transplant give you the chance to really FIGHT for your life and have a great shot and a normal one. No one knows how long Kourt will have these organs but there is no date that they expire. She may live to be 100 with these Organs but studies show 5 to 10 years. 5 to 10 years of wonderful is worth a lifetime of nothing. Knowing this we are greatful for the new life but at the same time realistic and know the medical care for Kourt will never stop. It will be less but its a lifetime of meds. Which we are all fine with. It takes fine tuning and constantly staying on top of it all to give Kourt the amazing life that she so deserves. She is still sick, a fresh Transplant comes with many dos and dont’s . The good news is that in this over a year long hospital stay I have “earned” a much ealier release then most families and the fact that I have local housing and can come to the hospital everyday, has given the team of Docs the confidence that we can take care of her outside the Hospital. I was asked whats another week when you have been here a year ? My reply Its a week that Kourt could have her dog with her, its a week that she can go to the park and swing on a swing, its a week I can walk down the street with her. Its a week that I can start her new life. How can you say no to that?
THE RULES!!! We have not come this far to lose it all. she has no immune system at all right now. I will be a raging crazy women to enforce these rules.
If your sick a week before, had a fever, starting to feel sick, even if its allergies Teething or something you ate, have no fever…you can NOT be around kourt. I will ask, and give health screening before seeing Kourt.
No flowers or plants indoors
No close contact with anyone
Mask outside of your housing
Gloves if she touches anything/ hand stantitizer
No children other then siblings in the same room with her
sunscreen outside/ dont overheat
No school for a year
No public places for a year (like disneyland) When she is doing well I will beg and promise mask and gloves
No close contact with anyone who is not up to date on vaccines including the flu shot. (which means if someone in school,when she goes back will have to get them or I will be told which children that can not be around Kourt)
Kourt will always have a supressed immune system because of the anti rejection meds which she will be on for a life time. She also does not have a spleen which put her at more of a risk…..Other then that she is a NORMAL kid:-)