May 26, 2010

Well, I guess I’m just not sure what to write lately. It seems that every time I jot a note about Garrett feeling better, within hours he feels worse. When I write that he’s feeling tough, he then proves me wrong by finding a burst of energy. Today was no different. Garrett had little energy today and was pretty melancholy and discouraged most of the day. One of his IVs was plugging up, so they had to have two more finger pokes just to draw blood for testing. We’re praying they won’t have to start another IV.

Garrett had a pretty tough night last night and woke this morning feeling very tough. His face is puffy from the disease and the treatments and his whole body aches. The little cowboy tries really hard to stay positive and feel good, but the apprehension he’s feeling about his immediate and distant future is pretty consuming. It would be hard enough for him under normal circumstances, but when he is tired and sick it gets magnified. He’s been having irregular heartbeats the past 24 hours that are different than what he’s felt before and they scare him. At one point he told me “daddy, I’m sorry I’m sad today. I’m trying to stay happy because I know what happens has to happen”. Y’know what? He’s earned the right to feel that way for a while. He asked his mommy to pray with him several times this evening, asking Jesus to make him better. When I talked to her at bedtime, she tearfully told me that it’s hard for her to understand right now…”he just doesn’t deserve any of this.” She’s right, but we will continue to trust in God’s perfect plan. We try to keep an honest perspective because while we're fighting a tough fight, in this hospital it is common to find folks who don't have near the blessings that we've been given.

Blood tests today show that his electrolytes are out of whack so they gave him a couple doses through the evening to help. These electrolyte disturbances primarily involve abnormalities in the levels of sodium, potassium, and calcium. While potentially serious if gone un-corrected, it is not surprising because of the oil changes he’s undergoing. Pulling the old plasma out of his system not only gets rid of the bad things, it also removes good stuff, too.

We did get a nice interruption part way through the day when some folks from out of town dropped in to bring us gifts and just pray with us a while. A very close friend of ours from Oklahoma also came all the way up here, too, just to offer support and be here today. These visits were timed perfectly and Garrett definitely cheered up and felt better for a while.

Tomorrow is a pretty large day for our warrior. Garrett has a 2 ½ hour plasmapheresis procedure starting at 7am, followed by 6 + more hours of anti-rejection infusions. But it’s supposed to be a beautiful day outside and we have lots of new movies to watch, so that will help take away some of the blues.

I can’t write much more tonight because I’m tired and need to re-charge the system. Kathy’s taking the night shift and I’m at the hotel with Jessi. We decided to get a room about 10 minutes away because true rest is rare at the hospital. We’re taking shifts so we can keep up our strength for him and for God. I’ve included a couple of photos, not to shock, but just to show you how sick our little guy is right now and how glorifying it will be to see a happy, healthy little boy again.

We deeply appreciate the prayers, intentions and love sent to Garrett. I’m asking that you continue to hold him up to our Lord in prayer and ask for a little tranquility in his mind and heart. His journey has many more miles to go.

JD