May 8, 2012

Last Friday

Last Friday Tim had a follow up at Children's with Dr. Gossett, the only member of the transplant/failure team that we hadn't yet met.  It was a quiet day at the hospital, always a welcome surprise and we didn't have much wait time at all.  Tim had a blood draw, an EKG, and a pacer check before we saw the doctor.  All the tests looked fine, things seem to be stable for the time being. 

We talked to Dr. Gossett about the IVIG treatment, which was not particularly successful.  Tim's rate went from 93% to 89% after the treatment, and change that the doctors don't find significant enough to warrant further IVIG treatment.  The whole issue of the antibodies and possible rejection is worrisome, but we talked about it, and like anything it is just something to be managed.  To wipe out Tim's immune system now in an effort to rid him of the antibodies could just as easily lead to a massive infection, or something worse.  Like many things in the world of medicine, there's a lot that is just not known yet about heart transplantation, especially in children.  Dr. Gossett reminded me that Children's is in the top 4 hospitals in the nation performing pediatric transplants, and they did only 17 last year. 

Other than that, we changed his medicines a little, but we're just going to keep on keeping on.  We're due back at Children's in early June, right before they move to the new hospital! 

We've been busy, busy here - Lou is playing soccer and baseball, and just made his First Communion this last Saturday.  Here are a few pictures from the little party we had for him.

Finally, if you're in the Chicagoland area, we are having another fundraiser, Sunday, May 20th at the Village Tavern & Grill in Carol Stream.  They will be donating 20% of all sales accompanied by the flyer below toward Tim's medical expenses.  We hope to see some of you!

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