Wednesday, August 11, 2010

Our hearts, prayers, and love go out to the Sabin family this week for the lose of their sweet baby girl Annie Sabin. Annie was 4 1/2 months old and was born with tetrology of fallot. For the duration of her life she fought against all odds and various other complications to brighten the lives of those who were lucky enough to know her.

One of the blessings of being a mother of a child who has special needs is that you are able to associate with incredible parents of other children with special needs. This is especially true in the heart world. I have met mothers in the cardiology clinic, in the pharmacy, in the outpatient blood lab, and in the hospital halls. Let's face it, Primary Children's Hospital is a second home to many of us. I was blessed to meet Amy Sabin after Matthew's transplant while Annie and Matthew were in the cardiac ICU together. I went to Annie's viewing on Monday to try to express my love and support to Amy, Cameron, and their family (Annie was the sixth child) but found myself being strengthened by them. What an amazing family with incredible faith and strength. This exprience was another testimony to me that during difficult times the Lord truly is aware of us and can carry us, if we allow him, when things get difficult. I would hope that if I was placed in a similar situation, that I would demonstrate as much faith and trust in the Lord as Amy and Cameron have these past few weeks. Thank you for your good example- truly you are amazing!!

Matthew had an appointment yesterday. We are in a holding pattern until his next biopsy which will probably take place the first week of September. Right now he is doing fabulous except he has an attitude that can only be described accurately by Emily (one of the transplant coordinators) as "roid rage". My sweet, mild tempered baby now hits, screams, and yells "no!!" routinely. I have to smile because I know that this behavior stems from the high dose steriods he is currently on and is not a reflection of his new personality-- hopefully! So far, his rejection has been attributed to the steriod wean schedule he was previously on. For most kids, the schedule works just fine. But, for others like Matthew, they need to be weaned more slowly and some kids actually need to stay on steroids forever. Only time will tell what Matthew can tolerate and if there was damage done to the heart as a result of this rejection episode. We are hopeful that once the rejection is under control, all the pressures will normalize. Until then, we are enjoying each daily victory!

Tuesday, August 3, 2010

Dear Friends and Family,

We know that it has been a while since our last posting but things have been fairly stable. . .that is until today. Matthew had another biopsy and unfortunately the results were not as good as we had hoped. He has mild rejection. We suspected it before we even got the results because his diastolic dysfunction was somewhat off on the echo and his wedge pressure was high on the right heart cath. He isn't going to go back to the hospital because it wasn't bad enough for that but his steroids which had almost been tapered off are now on higher than they ever were before. About 25% of heart recipients will have rejection in the first year. We were certainly hoping that we would be one of those families without any rejection because the mortality rate goes way up now and the longevity of the heart goes down. They have tried to tell us not be too concerned and that they see this all the time . . . I wonder if they have ever been parents.

Needless to say, we are frustrated. It looks like more house arrest is what we are in for. The frustrating thing is that we have done everything that they have asked of us to the T. We haven't missed any doses of any of his drugs, haven't taken him out, and have kept masks on (in our house) until about 10 days ago. Oh how I wish we understood more about immune system.

Matthew doesn't know any different. They call it silent rejection or early rejection because it really hasn't affected him much or his ability to function. Our next biopsy will be in two weeks and we hope that things will look better then. Please keep him in your prayers and we will try to keep you posted.