Day +26

Counts: Platelets ~ 24, Hematocrit ~ 40, ANC ~ 76, Weight ~ 12.9

I’m an anxious mess, right now. I’ve got major tunnel vision. Thursday evening cannot come soon enough.

Today’s labs were odd. Immature Granulocytes, Absolute ~ 10, Immature Granulocytes % ~ 1.4

Why is this significant? It could be insignificant or it could be significant. We won’t know until today’s results come back. “Normal” marrow does not release immature cells into the blood stream. This could be a routine part of his engraftment. Or not. I don’t record this to be alarmist. I am trying to log most of my emotions and the events surrounding them. Right now I don’t know how to feel. Which is where I should be. While I’d like to think I’m a Polyanna, I’m far to pragmatic. The next two days are going to be long. His decreasing ANC is freaking me out, too. There really aren’t any answers, either. When it comes to this treatment, there are NO easy answers. There has never been a Gregory, receiving exactly this type of conditioning, with bone marrow from his donor, with his type of Cancer. There is nothing cut and dry about Childhood Cancer Treatments. My best strategy, for now, is to be here. Right now. HERE. For Gregory.

Today’s procedures were…….. Bone Marrow Biopsy, Bone Marrow Aspiration, Skin Biopsy and Dressing Change were uneventful. nG Tube placement was a partial disaster. I’m not sure at what point he woke up, but he woke up before I could be with him. I highly doubt that my presence would have helped him, though. I was right next door, behind a frosted sliding glass door. He woke up and immediately started fighting the nG. Flailing his body, kicking his legs, trying to grab the tube and pull it out. I finally was able to get in the room and sit with him on the bed. He was completely inconsolable. It was a matter of letting him work it out and colapse in exhaustion. In the procedure room, there were three of us, hanging on to him. I was facing him, trying to talk him through it. Remaining firm that, “No. The tube will not come out.” “You need to tube to get better.” “We cannot go back to the Ronald McDonald House without the tube.” “We cannot leave the hospital without the tube.” “No. You cannot take the tube out.” We dosed him with Benedryl, thinking this would calm him down. It did. A tiny bit. So a bit later, we added Ativan. He struggled for a good 20 minutes, had about 2 minutes of calm and then went balistic. He needed to go to the bathroom. I told him that a bathroom trip was not an excuse to remove the tube, while we were busy getting it done. We did eventually use the bathroom, spent a few more minutes in the procedure room and then ventured back to our room. Oh yeah, they even put baby socks over his hands and “Kurt Cobain” (we nicknamed the Coban) around his wrists. He was smart enough to figure out that he could rub his face against something and work it out. He even tried to puke it out. I tell you, this kid was determined NOT to have this thing down his nose and through his throat, ending in his stomach.

We got back to our room, he struggled some more and eventually at least stopped struggling. He and I laid together for a little bit, I stepped out for a much needed moment to myself. When I got back I started to introduce little tid bits of information regading his tube. The major focus being that he wouldn’t need to take oral meds, anymore. At least by mouth. This perked him up and peaked his interest. The pump happened to be sitting outside our room so I grabbed it and he and I explored it. We plugged it in, started pushing buttons. Talking about what it does and why. Our nurse grabbed his “food” and Gregory and I helped her to fill the dispenser, she hooked up the tubing, Gregory hooked it to his tube and we started his “feedings”. We then dispensed his first oral med. His Ursodiol. Gregory got to push it through the tube and flush it. (He just woke up, kinda, trying to rub the tube. He asked what it was, I told him. He wanted it out. I told him he could help me put the Ursodiol through it in the morning and he was totally cool with that. “OK.” *crash, asleep*)

Despite the crazy placement and “adjustment”, he has made a quick peace with it. Whew, but man it was tough. Aside from diagnosis, it was the toughest thing, yet.

Tonight’s plea: That I will survive the next few days without driving my Mother to distraction and remain present for Gregory.

’til later, Gotta jet. I’m spent and need to check out for a few. *fierce squeezes* to you all. nG ~ Tuesday July 7, 2009

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in anc, day 28 bma, days 21-30, engraftment, gvh, ng tube, weird labs. Bookmark the permalink.

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