Thursday, October 18, 2012


Siting here, trying to help TYP with an assignment (rough draft of college essay for English). He's telling his story of his illness, beginning with how he was so fatigued in 7th grade.

But - he's falling asleep as we work. 

I don't like this kind of irony.

Monday, October 15, 2012

I know it's been too long since I last posted, way, way, toooo long. Whatever. Y'all forgive me, right?

And as I look back on my last entry, I see that I was on a soapbox, complaining about crappy customers (OK, maybe just one crappy customer) that my son had to endure on his second week in a new job.

And voilĂ  - ohhh the irony - The Young Prince has not been working since then. Not because of he became so dreadfully disillusioned about customer service, or ice cream flavors, no. He's not working because several days later (Labor Day weekend), he fell and broke his left femur. 

Huge ouch. HUGE.

He had surgery on Labor Day, a nearly 16" titanium rod - they call it a "nail" - was inserted into his bone to stabilize it while it healed. He came home a few days later, with a wheelchair, crutches, a commode, and a fair amount of pain, and a lot of frustration.

School had just started. He was missing it. His senior year, and he had been looking forward to making it his best year. Tom started running with a wonderful regularity in late spring, continuing for most of the summer. He ran with the cross country team a couple times too, and was contemplating joining them in the fall. But in late summer, before the leg break, there was a setback.

Tom was diagnosed with colitis, which I think I began to blog about around this time. It was a challenge to deal with this, but he started on Prednisone and then Asacol, and the flares were not so bad after a while. Then on August 30th, driving home from the follow-up/teaching appointment about his IBD issues, we got a call from one of his GI specialists. They wanted Tom back the next morning for an abdominal ultrasound. His liver numbers were suddenly too high.

Tom=frustrated. Pissed off actually. Can't blame him.

Luckily, the ultrasound showed nothing horribly outstanding in his liver. We were told to repeat blood work the following Tuesday. But then he ended up breaking his leg over that weekend, and was in the hospital anyway, for all kinds of blood work, X-rays, CT scans, and that surgery. And -- oddly -- his liver lab results were fine!

But his vitamin D level was too low, so he started on a weekly D supplement. The docs also ordered a bone density scan, obviously concerned about such a nasty break in a young person. (The scan would prove to be better than the one he had in 2008!)

Gradually, Tom's pain receded, he was able to start school about a week after his classmates, and slowly he was getting caught up. He was in a wheel chair and had to depend on other students to bring him to classes. Things were working out OK. Then about a week after he'd come home, we saw that his colitis was back with frequent, loose, and bloody stools. More blood work. Back up on the Prednisone. And his liver numbers were creeping back up too.

The poor kid. Terrible timing of it all, and his having to endure both raging colitis and a broken leg AT THE SAME TIME was so unfortunate. But we all managed. Not easily, Dave and I had to take turns sleeping on a love seat in the living room while Tom slept in the den on a longer couch. We had to be near by if he needed to get up for the bathroom in the night.He was not ready for the stairs to the second floor yet.

Actually, the whole thing was one of the more draining experiences any of us had been through in a while. Legit.

So now, things are better in some respects, and still shaky in other ways. Tom's leg is healing well. He had all 22 staples removed on 9/21, and got the OK to start water therapy. (We have not started that yet). His colitis stopped flaring. He stopped using the wheel chair for school several weeks ago. We had a great trip to the White Mountains earlier this month. School work is OK. 

But his liver numbers are still not right. Yesterday, Tom had an MRCP, a special kind of MRI to check his bile ducts. There could be a narrowing that is causing his enzyme numbers to jump. We'll hopefully get the results today. So, naturally, that's all be nerve wracking. And all of a sudden, there are all sorts of college open-house events happening. It's hard to keep up with. And SAT registrations. All the events and tasks that are part of the Senior year are coming fast and furious, and it's hard to keep up when everyone is feeling healthy.

So, wish us luck in all of this. Prayers, and Intentions and all the good stuff - send it our way please!