Monday, July 09, 2007

7/9 A Week’s Worth of Fun

It’s been a week away, and what a fun week it was! We were at Fair Hills family camp for a whole bunch of summer fun. Josie was in the full swing of things all week playing with all the other 4 to 7 year olds doing plenty of groovy things like water slides and playing in the sand and horseback riding and boat rides and swimming in the pool and eating (a teensy bit) and watching Mom and Dad eat like crazy and watching fireworks and fishing and baking cup cakes and arts and crafts and playing on jumpy things and all kind of other camp summer funness. We all had such a great time and none of us can wait to get back for next year.

Of course one of the things at summer camp which is almost unavoidable and usually desired is lots of sunshine. Josie was the queen of slather this week getting her morning, mid-morning, early afternoon, and afternoon cakage of spf 30. Still the sun is not Josie’s friend. Perhaps it was the sun, or maybe it was just a coincidence but Josie’s skin seems to have flared up pretty good. The spots on her arms are much brighter and look to be starting to break down and through...but that might be a little dramatic talk since they’re not open sores... yet. Her lacy rash is more prominent on her arms too and her elbows have fairly bright red marks on them. Josie’s face is quite a bit redder than it’s been lately. Clearly Josie’s disease is still in an active state, but the question is how to we regain control? We thought that the addition of Remicade was going to help, but it’s not provided the kind of impressive response that it had in the past. Discouraging. Josie meets with Dr. Vehe on Wednesday for another important visit. It’ll be three weeks since her last visit with him and I’m fairly certain he’ll be unhappy with her progress slide.

Breakthrough soresPerhaps another explanation for her apparent relapse is that she missed her IVIG and heavy-duty steroid bolus last week while at camp. We all agreed this was to be a good time to try skipping a dose of each...to see how she responded. I’d be surprised if orders aren’t given to resume weekly doses of both. We need to get Josie more stable to start weaning her off the IVIG. Sure it’s wonderful stuff, but good gravy, it’s expensive...anywhere from $4,000 to $9,000 per dose. Most folks would be perfectly fine to earn that much rather than injecting it into one’s arm...but that’s where Josie is at this time.

Scare of the Week

While enjoying camp, Josie was taking part in almost all the daily activities. On Thursday, she was taking a ride on a horse as part of a structured activity. Can you guess what happened? Of course it had to happen to Josie... all of a sudden the horse bucked and Josie was thrown off its back. The staff person walking along with Josie lost her grip when the horse bucked and Josie fell right off and landed flat on her back. This was a little alarming, given that a one-foot fall onto a carpeted floor just two months ago resulted in a broken femur. Luckily there was a family practitioner, two emergency room doctors, and a general internist staying at the camp too and they were there on the spot.

Josie was shaken up a little bit and immediately complained of pain on her back and chest near her sternum. We all agreed it would be a good idea to take her into the Detroit Lakes Emergency Room to get a once-over from the ER doc on staff and to get a CT scan if needed. The fear was that with Josie’s fragile state and given her enlarged liver and spleen, that kind of a fall could have damaged either of those organs or broken a bone. When we arrived at the hospital Josie was feeling better already and was no longer complaining of pain. The ER doc checked her out and agreed that she was doing well and just to watch her close over the next day. If there were and kind of internal bleeding Josie would demonstrate obvious symptoms. We left and that was that. No problem...just a bit of a scare.

So now were all back in town ready to take on the rest of summer. This week it's doctors visits and some more physical therapy, plus a fresh dose of IVIG and steroids tomorrow. Can't wait.

1 Comments:

Blogger BREZZ said...

just found your page-- can you tell me waht that is in the pic of an'arm?"
red spots?
broken blood vessels? what causes that? does anything make them go away?
do they get worse?
i have those-- and keep getting more-- i don't know what they are-- dr's say don't worry-- well, i worry.
it started with one on my arm.. now i have a couple dozen on both arms and both legs.
wtheck?
thanks

5:20 PM  

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