Bone Marrow Biopsy

Tomorrow is bone marrow biopsy day. Geez, we need to get it done already! I'm so nervous. We could actually find out more about what is happening inside the mysterious nether-regions of C's marrow and circulatory system. Craig and I are both going together, so I feel much better about the whole thing, but the past few days have been pretty difficult.

First, we started the 72 hour fecal fat test, except there wasn't enough fecal to measure the fat. C never has solid stool; it's always pea-green and runny, or the consistency of a smoothie. I must be losing my mind, associating something edible to my son's poo. Well, it's been a long week already and it's only Tuesday. Anyways, his poo always smells like rank and moldy bread, like when it's left in a tupperware container for too long in a hot vehicle (not that Craig does this or anything...).

So we stretched out 72 hours to a whopping five days. The lab says they think they can use day 2, day 3 and the special add-on, but day 1 might be too old by now. Well, crap! haha.  We tried. This test will be used to indicate if C has a problem with his pancreas and digesting food.

Monday morning we took C in for what the doctor described as a "skeletal survey." Basically, he had to be held in place as he fought like crazy and in some cases his limbs had to be strapped down with tape to get several x-rays that would show his entire body skeleton. And I know I mentioned my concerns about stopping his Neupogen in my last post, but another medication we stopped was his daily doses of Acyclovir. He'd been on it for two months as a hopeful means to suppress his "Cold Sore Virus" outbreaks. Well, it worked. Obviously so because on Mon morning I noticed a crop of blisters popping up underneath the meaty flesh at the base of C's thumb. By Mon afternoon, they were humongous. So now he has HSV-1 again (cold sore virus) on his hand, it looks painful as hell, and I fear another hospitalization if the meds don't contain it and GET IT GONE. When I got occasional cold sores as a little kid, I never, ever imagined they could torment someone like they torment our little guy. And not just on the mouth either, but on the eye, the thumb, the thigh, the ankle.... oh, yeah. This stuff is not fun.

In addition, H scratched herself to bleeding this afternoon and now her flesh is oozing clear fluid again. I'm not sure what this means (possible Staph?) but I have a feeling her skin is going to start getting worse as the weather changes though I really, really hope I'm wrong.

But good news. We are getting nursing help! Hooray! Mondays and Fridays to start, but possibly for 40 HOURS a week. First day is Friday. I couldn't be more relieved. It is so difficult to help C when he is writhing and screaming and agitated and just wants to be held and at the same time care for J's needs and H's attention-demanding attitude. Plus, there is the issue of taking him out in the germ-infested fall and wintertime when all of the viruses run rampant around here. I have so much to run around and do and I don't want to take C out a lot until we know what we are up against and I know he's being treated.

I just know we will get an answer soon and we can begin to help him (and maybe, just maybe, give him a taste of REAL FOOD someday in the near future...). Please keep him in your prayers.

School days, school days... so close, yet SO DARN FAR AWAY. Thanks for checking in. We'll keep ya posted ;) Hope you are all enjoying the last part of the summer!

Till later.