A bitter little pill

We made it through the Christmas holiday in good shape. I came home after running a few errands on the 27th, and Kevin had taken down the Christmas tree and put all the decorations away. Needless to say, I fell in love with him all over again.

New Year’s Eve, I received a call from TCH. The preliminary results came back on Colman’s blood and tissue matching and it’s not good. Colman is sensitized to a very large portion of the population, which means finding a donor heart is not impossible, but it’s going to be very difficult to find a match. I think the words the cardiologist used were, “His antibodies really couldn’t be much worse.”

The main reason for the high antibodies most likely stems from Colman’s first open-heart surgery when he was three days old. During that surgery, the Norwood, he had to have a homograft patch sewn into his aorta to make it bigger. Any time you have foreign material like that, it can cause the body to develop antibodies. When you have a homograft patch in addition to all the blood products Colman’s been given over the course of three major heart surgeries, it doesn’t always make a good situation as far as antibodies go.

I knew this could be a major problem, which is why I asked them to check his blood when we went for the talk. In my experience, there are a lot of CHD kids who struggle with high antibodies when it’s time to be listed for transplant. I was just hoping we might catch a break on this one.

And we didn’t.

Antibodies aren’t really anything we can fix. What they’ve found is that once your bone marrow has made those antibodies, it always remembers. So that means we cannot put a heart into Colman that he has antibodies against because his body will attack it and he’ll go into rejection.

We are still going to TCH on January 7 and 8 for two days of the transplant evaluation. Our January 6th appointments are being rescheduled. Dr. Fraser wants to meet with Kevin and I himself and he won’t be available on the 6th, so we should get a new date for those appointments.

I’d be lying if I said I haven’t felt a bit weepy the past couple of days because of this news. And even though I’ve gotten over the whole life being fair thing, it still sucks because this is so not fair. Something that I knew was going to be really hard just got a whole lot harder.

I have half a mind to take Colman by Doris Taylor’s office at St. Luke’s in Houston–the doctor who’s growing pig hearts from scratch–and say, “I just wanted you to meet a little boy who could benefit from the kind of work you’re doing. We need a heart. A heart his body won’t reject. I’ve got the stem cells from his cord blood at the South Texas Blood and Tissue Center. Is there anything I can do to help you move this along?”

Because how could she not be motivated by Colman’s wild blond hair and laughing blue eyes?

I’ll update when I know more. Right now, I have to go force feed the boys black-eyed peas. They hate black-eyed peas, as do I. Right now, my house smells like I boiled a dirty diaper. But we need all the luck we can get, so I told them they had to eat one spoonful. Even if they had to swallow each and every pea like a bitter little pill.

Colman’s down with the program as long as he can have milk with his peas.

Here’s to 2014! Go easy on me.


10 thoughts on “A bitter little pill

  1. We hope the perfect heart finds Coleman soon. Reading your blogs always reminds me of how precious life is. And of how we need to remind ourselves to focus on what is really important in life — the people we love.

  2. Praying for you and yours. I am no black-eyed. Pea lover either, but my daughter made a really good bean dip ‘that used the nasty little things that was really very good. I had no idea there were black-eyed peas mix in with the sour cream and other yummy stuff until she told me. We have leftover peas here. She will be making mo’re dip. Give that precious boy a hug.

  3. Oh, hon. That sucks!!! I know that’s not really profound or comforting as words go, but I just want you guys to know you are always in our thoughts and we love you.

  4. We will be praying and hoping that a perfect heart for Colman will be found when his time comes to need one. We think of Colman every day and love to see his beautiful, smiling face in photos. Our thoughts and wishes for good news will be with your family next week.

  5. Lancelot was not a candidate for heart of lung transplant because all of his arteries and blood vessels were to small. Having such high BP is heart should not have made it past his 2nd Birthday. He is now 21, and his arteries and blood vessels are still smaller than a Newborns.
    You can look at like my son has a remarkable Heart or when man Can’t…God can.

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