Daddy checking in from Room 93 in Cincinnati. Today marks JT’s 26th photopheresis treatment.
Good news first. Two weeks ago, I asked for prayer regarding the side effects JT was experiencing as a result of the mega-doses of steroids he’s on. Dr. Filipovich reduced his daily oral dose from 4 ml to 3 ml last Thursday and I’m very thankful and very relieved to report that I’ve seen significant positive change. He’s still plenty hyperactive, but it’s back to being somewhat manageable – he’s able to regain his self-control and he’s able to make rational choices and we’re able to reason with him again. Thank God. We look forward to the day when the steroids are gone for good and he’s completely back to himself.
Not sure if they’re going to reduce the steroids more this week or not; they’re gun-shy from going too fast last time.
In her blog update Jodi neglected to mention a fairly traumatic experience from last week – somehow there was a pen that JT was playing with and he put it into his mouth and in her haste to get it out of his mouth, Jodi pulled out the IV needle that sticks straight out of his chest and goes directly into his port. Very, very stressful. And it would have been okay because his infusions were all complete… except that they hadn’t yet put the Heparin into his line… so they had to access him again. He was not happy about this at all. In fact, he was more anxious than usual this week about accessing his port. However, by this morning, he was back to his usual self– sitting there bravely and quietly while they drive that huge needle right into his chest. My 4-year old son is the bravest person I know.
During our off-hours from the hospital on Tuesday, we did some Cincinnati treasure-hunting. If you haven’t yet heard of “geocaching”, you really must, immediately after reading this blog entry, go to
www.geocaching.com and check it out. It’s the greatest adventure sport/game ever invented – a medley combining the best parts of
Treasure Island and
The Goonies and
National Treasure. We love it. Anyway, we went after some caches here in Cincinnati and discovered some really beautiful and off-the-beaten-path places that we’d have never found otherwise.
We also had a bit of an alarm…at one of the caches, we were out in the heat of the day - wading through a river to get to an island out in the middle, and JT overheated badly. He started crying and screaming and I had to pick him up and make for the car as fast as I could go. By the time we got there, he was pretty much at total collapse and even when I got him inside and in front of the AC vents, he was semi-hysterical. I felt his head and it was burning up. Thankfully, the AC cooled him off fast and in ten minutes, he was totally fine again. I asked him about it and it seemed to hit him fast and hard – one minute he was feeling a little overheated and the next minute he was in big trouble.
And I had to kick myself – when I passed a bank on the way back to the hotel, it read 94 degrees. By the time he had on long pants, boots, a long-sleeved UV protective shirt, UV protecting gloves, and a big sun hat with sunglasses, he was a roast waiting to happen. He had on his cooling vest over everything else but in retrospect, that vest was fighting a losing battle. We both wanted to get out of the hotel room so badly and I thought it would be okay to go for a short burst of time, but I learned that when it’s that hot, he’s got no business being outside at all. And that’s fine – we’re still learning as we go.
Last week with Justy was a welcome reprieve for me. We went treasurehunting and played Frisbee golf and saw wild turkeys and ate pancakes at Perkins – he’s a great, great kid and it’s so relaxing and quiet to hang out with him, especially after a week of hospitals and hotels. But it’s busy in a different way too…on the homefront, we’re painting the exterior of our house; Jodi has made good progress this week and she’ll pass the brush to me tomorrow…
So that’s what’s up. Please continue to pray for JT’s healing and for him and Jodi as they travel back here early Monday morning. Thanks for checking in with us.