We have continued to have blood work done every 2 weeks. I really do know better than to assume "No news is good news", but I have been getting copies of the blood work each time. And really, it's all pretty terrible but it doesn't seem a LOT more terrible to me. After all, this isn't my area of expertise at all, and the specialist said we'd meet the transplant team in the fall.
So, when, without warning, I get a BIG packet (addressed, I might add, directly to my child, so if she had been home that day, opened it (since she has been getting mail directly from the kidney foundation and finding that to be very cool even if she doesn't quite "get" everything they mail her) and put it away in her room I might never have even SEEN it!), from the transplant team telling us our appointment has already been made for July 14th...."Please arrive at 7:45 AM and be prepared to stay 6 hours....."! My heart is pounding now just remembering how it felt to open that packet. And of course, it's 6PM. On a Friday. Still WEEKS away from the appointment, so I really don't want to call the "emergency" crew, especially since odds are good that whoever answers won't be the docs who already know her. Sigh.
So, I rage and I cry and I get hysterical, and when I'm done hubby does the same. And there is a part of me that is like a little kid, howling, "....but you PROMISED! It's not FALL yet!!!"
And then I tell my little one that it looks like things are moving a bit faster than we thought, and we look through the educational stuff again.
And once again, she surprises me. I've mentioned, tangientally, that she's a bit young for her age. What that means in real life is that she's a little slow, just above the range of high-functioning mental retardation, but barely at the bottom of what is considered "normal" intelligence. She's been held back a year in school, and still reads almost 2 years behind her grade level. But she has a never-quit spirit, a great enthusiasm for the outdoors, and a vast quantity of practical good sense (which is a rare quality in many adults of any intelligence level!).
She says, "So I may need dialysis sooner. But I want the belly kind, not the needle-in-the-arm kind." Hooo. Well. I am speechless for a minute, and then I say, "Well, then, that's what we'll get." I figure, no point in telling her that that IS what's she's getting, no choice in the matter, which is the truth. Thank the good Lord she thought she had a choice. And that she picked what is inivitable for her while she still thought she had a choice. We have so little control here, so I'll settle for the mere appearance.
Monday finally comes, and I call the NP and let her know I REALLY would have appreciated a heads-up before I got all that paperwork. She apologised, and expressed some astonishment that we had gotten it all so soon, less than 24 hours after she asked her staff to set it all up.
Arghhhh - the one time there is some semblance of efficiency. And it kicks me right in the chest.
DeeDee
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