Thursday, August 23, 2007

8/23 Much the same…again.

Over the last two weeks Josie has had her routine fevers every three or four days with the most recent this past weekend lasting two days at about 102°. Because of that the docs are choosing not to do Remicade to treat Josie’s disease. Remicade, you may recall, really blocks the immune system from doing what it should and that makes someone very susceptible to any kind of infection. Of course having a recurring fever leads the docs to think that there’s a bug in there kind of hovering – attacking and retreating but not going away – and if Josie’s immune system is weakened further with Remicade then that bug (if it’s really there) will be provided the opportunity to take off and that could lead to some real trouble. So we’ll wait.

Josie’s still been getting her weekly steroids and IVIG (at about $5,000 to $8,000 a pop) – (!). But I don’t think anyone is questioning its effectiveness. She continues to improve, slowly for sure, but improving. Her physical therapy is moving forward nicely. She’s able to walk up and down short stairs (about half the height of normal stairs) without using a rail. Her duck walk is improving and her gait is becoming more normal. She still lands with a rigid leg…not quite locked…but not the flex of a normal walking stride either. She can move along pretty quick when she “runs”. It’s really more of a fast walk and she takes the form of a speed walker when she runs. As her strength improves she’ll hopefully start to leave her feet like a normal run, but that’s still a ways off, but it’s coming.

Her appetite is still very low. She’s getting all her calories from the feeding tube…still hooked up 14 or more hours each day. She’s taking in less than 10% of her calories by mouth now…but it’s improving too, and time and persistence are the only things which will help. Speaking of feeding tubes, we had another accident yesterday with Josie’s feeding tube being yanked out of her stomach. This time it was Mom doing the deed getting the tube tangled in the car seat, and POP, out it came. We hustled her inside and quickly inserted a new one (which we had on hand here at home just in case). We fixed it in place and that was it…no big deal. So Mom leads Dad in the yanking-the-feeding-tube-out-of-the-daughter contest 2 to 1. There’ll be a big prize at the end of the contest to be determined. It was probably time for that thing to be changed out anyway…the inside part of the tube sitting in the stomach was all black and gross…and I suppose it would be a little gnarly sitting in a stomach for several months with all that stomach business going on…so that kind of justification makes accidents like these a little easier to take.

Mr. Hyde has been making more and more frequent appearances, unfortunately. Josie’s been sleeping in her own room now for a while (which is great) but almost every night she’s waking up and incredibly ornery. Her grouchiness at times combined with the stubbornness of the most cantankerous mule, and the unreasonableness of the most bad-tempered two-year-old, makes dealing with this girl most demanding. Her tenacious insistence on getting what she wants is impressive, but not a lot of fun to deal with…especially for Deb…and that makes for some disrupted sleep at times.

The Long-Haul is the name of the game around here. Everything is looking better! But everything is taking so long to get better; the improvements are small and take weeks to see. It makes recovering from a pulled muscle or broken bone cut or bruise seem like a flash by comparison.


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