July 19, 2010

Well it's a new week with new information to share.

Kathy got home from her trip and I'm not sure who was more excited to see her; me or the kids. After a week of playing "Mr. Mom", I'm sure glad to have the foreman back in town. The kids, too, are really glad that she came home and took my big stick away from me.

Actually, we had a great time together. Warren and Garrett spent nearly every minute doing something together and the messes they made were worth the joy I saw. Warren went to the hospital with us and stayed by Garrett's side through all the check up routines. Garrett truly looks up to his “big brother” and Warren’s patience impressed me. Both boys treated Jessi fine although she spent much of her week playing with her little friend Lexi, from out of town. The girls have known each other since birth as they were born in the same room, both premature, less than 24 hours apart. They became room mates in the neonatal intensive care unit for the next month or so. It’s pretty keen to see them together.

Our highlights for the week included a private tour of the Pro Rodeo Hall of Fame and box seats for the rodeo, all courtesy of Brenda and our friends at the PRCA. Then on Saturday Marc and Christina Smith, members of the Hoyt and Peterson’s Bow hunting Archery Pro Staff and many others whipped the mules to pull off a benefit archery shoot at the Air Force Academy range. Their kindness is second-to-none. We were able to stop by for a few hours and had a blast. All the kids got to shoot and Garrett even beat me on a “closest to target” shot at a quarter sized dot. There truly is nothing like sharing God’s outdoors with a child.

The unfortunate lowlights of the weekend were Garrett's cousin Levi having to undergo emergency surgery to relieve fluid in his lungs. That fighter is doing better, too. Later we finally told Garrett his beloved ol’ mare died. There never seems to be a good time for bad news. His little heart was shattered and he sobbed for her. But I promised him a replacement and will make that happen soon. We tried yesterday but it wasn’t a good fit.

Today, and only home a couple days somewhat refreshed, Kathy got back in the saddle and took Garrett to the hospital for another check up. But we received information about his antibody levels and they’re still too high. Sometimes all of this information gives a distorted panoramic perspective of where we've been and where we need to go and it can be hard to comprehend the magnitude of the situation. I've always said that you can only eat an elephant one bite at a time; it just seems that every time we take a bite, like a lizard tail, a daggone piece grows back.

As good as Garrett has been feeling compared to where we were a few months ago, he's still got quite a journey ahead of him. He is apparently not producing the antibodies from the donor heart rejection, which is good, but the PRA (Panel Reactive Antibody) level is still too high. So unfortunately we have to go back in this week for another round of infusion. The PRA level is driving the infusion treatment regimen right now and it appears to be working. We’re just not there yet. Treatments to reduce his PRA include the Rituximab (a B-cell specific antibody), IVIg, protein A immunoabsorption and plasmapheresis. These are all the ones their doing/have done on Garrett so far. The PRA is a blood test routinely performed on patients waiting for kidney and heart transplants and it measures anti-human antibodies in the blood. Patients showing high PRA’s are often referred to as ‘sensitized’. Patients with high PRAs are less likely to receive transplants if they need them, as the risk for immediate antibody-mediated rejection is significantly increased. That means it’s a bad thing.

When I had the chance to look at my sleeping family all together at home again on Saturday night, I wished I could snap my fingers and let them all dream the perfect dreams and wake up to a perfect world with no fear or pain. But as a friend once told me, that's Somebody else's job. The only perfect place is where we will all be together in paradise. So my job now is just to give them all completely to Him, follow His will and stay the heck out of His way. He works better when I’m not trying to fix things.

JD

P.S.: By the way....Garrett does NOT need a new heart. We hope he won't. Help me stop the rumor.