Since my last post, Madison has had 2 more cardiology appointments. Dr. Everitt continues to deliver perfect news each time. And I continue to leave each appointment with the hugest smile on my face! Our only small, very small hiccup is Prograf!
For those who don't know... Prograf is an immunosuppressant medication. By suppressing Madison's immune system then her body is less likely to reject her new heart. It is because of medications such as Prograf that can allow Madison to get sick easily (because her immune system is weakened) and that is one reason why we stay home ALL THE TIME..
Thanks to Prograf, we still have appointments twice a week. We have never been able to get her levels to the correct level that they need to be.
Wait, Timeout, Back-up... One mistake that her medical team and I have discovered is that Madison has been taking the generic form of Prograf. It's called Tacrolimus. Mark and I don't remember anyone telling us, or reading any material that said not to take the generic form. We had no idea! ggrrr! (Please tell me that this has happened to somene else..) I remember our pharmacist asking if we would like generic or brand name. I wasn't thinking insurance or cost or anything. I simply said, 'generic please' cause that's what I always say. I didn't even think of asking Emily or Dr. Everitt. Apparently the generic form doesn't absorb well. There are a couple other meds that Madison takes in a generic form and those are fine. It's just the darn Prograf!
So, beginning tomorrow... we are switching to the real Prograf. This is going to be a little tricky as Madison is on a high dosage of Tacrolimus and probably doesn't need that much of the real stuff. She will probably have blood draws every couple days unil we get her level where we need it. Dang it!
In regards to Madison's mood change that I had mentioned in the previous post... she's teething! Note to self: No need to chase daughter around the house with a stethoscope when teething.. it only make matters worse. Lesson learned.
Again, thank you to all of our friends and family for your prayers and support. We love you.
6 days ago