Monday, February 22, 2010

Prograf Drama

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.

Thursday, February 18, 2010

Valentine Pictures

This is Mark, Madison's dad. Michelle wanted me to post her valentine card. We were originally going to have family pictures taken the first week in December for our Christmas cards, but that didn't work out as planned. So, here is the Valentine card as well as a few other pictures.

Sunday, February 14, 2010

Happy Valentine's Day!

I did it again.. I accidently went too long between postings. I apologize, especially to Madison And promise to do better! (and now I have way too much to say..)

Happy Valentine's Day to everyone!
Isn't this so fun!? There are hearts everywhere! I love it! I love that the entire world is celebrating this holiday with the symbol of a heart. I can't help, but think that we as heart moms and heart families might feel this holiday at a deeper level. Today has actually been a little emotional for me. I keep telling myself.. this is silly, it's only Valentine's Day. But, I will never take the meaning of a heart for granted.

** I wanted to post our Valentine Card that we sent out, but I seem to be having trouble. (ggrr!) I'll recruit some help and add it tomorrow. (gee whiz!) If I have your address, yours is coming in the mail.

Today was also fun as we delivered Valentine cookies and chocolates to our friends. Valentine's Day has definitely become my new favorite holiday!

Here is a little update on Maddie: Madison has continued to do absolutely amazing! At her last appointment (appointment #12), Dr. Everitt kept watching her. As she was watching her, I could tell that she was thinking about something. After a few seconds, Dr. Everitt started laughing and said, "I don't mean to stare. It's just that Madison is doing so well and everything has turned out so perfect. It reminds me of why I do what I do everyday." She was right. Everything has turned out so perfect with Madison. We are so blessed and so happy! She has also continued to gain weight. Maddie now weighs 19lbs. 3 oz. and Dr. Everitt DC'd one med. We are down to 12 meds per day.
(I'm sure our pharamacist will be bummed that his work load is decreasing.. )

So here are some things that we are struggling with.. (and I'm trying not to worry). About three days after this appontment, Madison's mood has changed. She has become whiny and extremely needy. She wants to be held all of the time, but doesn't seem comfortable when I am holding her. She doesn't have any symptoms that she might be getting sick. This behavior isn't like her at all. It does worry me because this can be a 'heart failure' symptom, BUT she has a perfect heart. So, I should be able to check heart failure off my list and move on. But I can't. Mark and I go through our 'possible rejection' checklist numberous times each day. It's driving me crazy! This past week, I have spent all day with a stethoscope around my neck.

A couple days ago, I did call Emily (our transplant coordinator) and explained Madison's symptoms to her. Emily was a little concerned. She gave me a couple other symptoms to watch for and asked that I keep in touch with her. I hope that this is just a phase that Maddie is going through. Heck, maybe she is teething?? Something so simple that doesn't cross the mind of a heart mom.. instead we chase our babies around with stethoscopes. Our poor kiddos.

To make things worse, today is Sunday and Emily called me. What? Who gets a random phone call from their doctor on a Sunday? I don't think Primary Children's should be making phone calls on Sunday's... (isn't that a rule somewhere..) It only worries the parents! Anyway... Emily was calling because Dr. Everitt would like to see Madison on Tuesday morning. (Because of the holiday tomorrow, Madison was going to go 10 days between appointments.) I think because of my phone call to Emily then Dr. Everitt wants to see her sooner. Also, Madison's Prograf level is still not at the correct level. We have increased it at every appointment. Anyone else have Prograf level issues? Should I be concerned?

Take Care. I will post pictures tomorrow.