May 25, 2010

Today, we got more of them than they got of us. Garrett had a really rough night of last, but mercifully today was better. He underwent another round of plasmapheresis and another dose of anti-rejection infusion without any problems. Although extremely tired and still very uncomfortable, he stayed in good spirits. He wore a Nike arm band today that Chris Thomas, his Air Force buddy, gave him after the Armed Forces Bowl. He said it helps him be tough like Chris.

This afternoon after the oil change, he asked to go for a walk. Said his rear end was getting sore. Geez, I don’t know how he lays in that prison of a bed as long as he does without complaining. We got permission to mask him up and go on a little expedition on the floor, but he didn’t have much strength. We ended up getting a wheel chair after about 100 yards and Jessi pushed him around a while.

We came up with an ingenious solution to the 4-6 inches of lumen connections sticking out of his neck. They tend to bend over and hang out, catching on anything, and this obviously causes him concern and discomfort. So before we took our trip around the floor, I took some coban, which is like elastic vet-wrap tape. I made a sort of Rambo-like head band. It holds the lumen ports against his head so they don’t bounce around. After putting the mask on, he looked like a diminutive bandit heading out to rob a 7-11.

We’re hoping that tomorrow or Thursday we can make a conference call of sorts to his classmates. It’s their last week of school and we initially had planned to surprise him with a day trip home to see his friends, from a distance of course. Following that, we had tickets to the Rockies game for this Thursday’s matinee. They were a gift and were right behind home plate. Well it’s pretty certain we’re not going to make either of those, so at least we want him to be able to say “hi” to the kids at school one last time before summer. Hopefully he’ll get the chance to see his buddies before too long and just be a little boy again.

He’s been resting well tonight so far, but gave me a bit of a shock when his alarms went off about midnight. His pulse rate went way down into the high 70’s and his respirations were down to 4-5 per minute! Then he got a little fussy and was obviously having a nightmare again. His vitals suddenly shot up to over 120 bpm with 19 respirations. After a little while he settled, but for a few minutes my own heart got to beating pretty fast. Those bad dreams must really be something!

I had another friend ask how we try to keep a positive attitude during the tough times. It isn't always easy, nor are we always smiling. But it's the big picture that counts. During my “down time” I’ve been reading “Lone Survivor” by Marcus Luttrell, a retired Navy S.E.A.L. who recounts his harrowing battle in Afghanistan in 2005. It is the worst loss of life for the S.E.A.L.s ever, and yet describes a personal triumph of monumental proportions. It is a must read for anyone who wants to know what really happens over there and what men are capable of enduring when they refuse to quit. The “never-say-die” mind-set of these heroes is awesome. I find myself reading all kinds of books throughout the year, but tend predominantly toward true stories of valor and achievement. They inspire and help me to keep my focus and remind me that battles are won or lost based on faith and attitude.

We try to surround Garrett with positive thoughts and examples. We encourage him to seek role-models who display behavior that demonstrates their faith in God, willingness to first learn to serve others and who drive-on through pain and sometimes seemingly insurmountable odds, to honorable victory. We can provide the information but that decisive, stubborn and competitive fortitude has to come from within. I think we’d all agree that this boy has it.

Have a blessed day and don’t forget to fight the good fight!

JD