April 20, 2010

Well we've taken a couple steps forward and slipped back a step or two today. Garrett had a miserable day because of a severe reaction to the infusion drugs. Kathy called a couple of times today and both times I could hear Garrett crying in the background. Jessi and I packed up and came a runnin'. Kathy had been up with him since 3am. She'd given him three oatmeal baths, cooled him with wet wash cloths, rubbed caladryl lotion all over him, given him benadryl.....nothing worked. The hospital called in a prescription antihistamine, but it didn't seem to help. Kathy felt scared and alone with a boy who had cried nearly all day because he felt so bad. Garrett has put up with more pain and discomfort in his short life than most old men will in a lifetime. He never carries it very far. He only wants to feel better. As soon as he does, he's back to playing as hard as we'll let him. For him to cry off and on all day long, I knew something was up. I heard him in the background whimpering that he was scared and needed daddy. Say no more!

The hour and a half drive north came complete with four more calls from Garrett and his mommy. Now his hands and feet were starting to swell and the bumps on his body were getting worse. I paged the transplant team and was told it was an unfortunate, but sometimes anticipated side effect of the infusion. Knowing what it was didn't settle me down much. I wanted relief for that boy...NOW. They called in another script, this time for a steroid. Our only options were to try the oral type or run him to the hospital for an immediate IV to help stop the discomfort. Garrett has been harpooned, poked, prodded, stabbed, cut, jabbed, injected, needled and IV'd to the point they have trouble finding a good spot to start an IV now because of the scar tissue. Blown veins and backed up IV's in the past, requiring multiple attempts and holes, have left him pretty scared of another. This is the first time IV ever seen him want an IV....he was that uncomfortable.

In an effort to avoid the emergency room and the inherent germs found therein, we tried the oral. We also gave him more lasix to try and help his kidneys do their thing. The whole ordeal today wore him out to the point that he finally fell asleep a little while ago, so with any luck at all, he'll rest tonight and let the Rx do its thing. I'm not sure how to describe it, but I've never seen a rash like this on anyone. It's as if you rolled him up, head to toe, in poison ivy. If it is skin, it had a swollen, red nasty rash and bumps on it. Head to toe. He can't scratch, because he can't afford to open the skin due to the infection potential which his body can't fight.

I took his vitals a while ago. His bp is a little low, so I'll just take the night watch and rub his back while he sleeps. We're not that far away if we have to run him in tonight later. If he rests ok, we'll most likely run him in to clinic in the morning. God, I wish I could take it all away. Through the whole situation tonight, little Jessi was curled up quietly on the couch, watched us and said not a word. She's scared. Mommy's scared. Garrett's scared. So help me, if He'd let me, I'd gladly take it all myself just to give them a moment of peace. Tomorrow will be better. Sleep does wonders for the emotions.

I know this much - if Garrett wakes tomorrow and the Rx has worked, and he's no longer in pain from the rash, he'll act as if nothing happened today. He just doesn't waste time being upset today about what happened yesterday. Today has too many new adventures to hatch. Daggonit, but that kid is just tough as ten kinds of horseshoe nails!

Tomorrow will be better. It just will. Please don't let this story shake anyone. It's just the way it is right now. We know we had to trade poison for poison. They knew they had to make him sick in order to make him better. Sounds lousy, and it is, but that's just the way it is. It's not like we have other choices. It's fight, or curl up and suck your thumb. We're not about to curl up.

The kids at Garrett's school started a "Cowboy Up" week yesterday in honor of our little warrior. Jessi kinda scoffed that it's no different than "we" always dress anyway, but after I explained it I think she understands that most kids don't dress that way or understand what "Cowboy Up" really means. It's just their way of supporting Garrett AND her, and that's pretty keen.

I'm glad no one sees him on days like today. It's hard to take sometimes. We know there are more days like this ahead, but the prize at the end is too great not to wade on through. We're going to have some kind of celebration when Garrett gets to come home later this summer!

May the Peace, Joy and Love of our Lord be with you all this week. We feel all your prayers and they make days like today easier to whip. God bless you.

JD