zen.org Communal Weblog

March 13, 2011

Moving on

Filed under: — elana @ 21:57 GMT

Thanks for all the comments on yesterday’s post.  It’s nice to know you’re all reading!

Today was better.  I got into him early for an hour, while our friend D and her son hung out with the boys.  Weekends are going to be tricky, but we’ll work that out later.  So around 10:30, I go in and he’s talking to Dr M (not one of our normal docs, he’s the weekend hemo doc), chatting and talking about things.  B looked better rested, but still tired.  So we sat and talked for a bit, and he rested.  I talked to Dr M about things that family want to know (like what are the procedures for getting typed for a bone marrow transplant) and B just chilled.  His fever was on and off again, including chills that shook the bed.  He’d gotten more blood overnight (again, thank you Anonymous Donor) and some platelets.  Not a great sleep overall.  Nurse D and I worked out that B would get some paracetamol for the chills/mild fever just so he could rest, and Nurse D would keep the stuff done to him down to a minimum.  We also worked out that B thought that his bed had to stay at an angle for the oxygen delivery to happen, but D said no, it can be flat, we’re happy with your oxygen levels right now, it should be fine.  That’s when I realized how much the slight angle in the bed has really been effecting B…we put the bed flat and B sighed contentedly.

B put in his earplugs and curled up, and I left.

When I came back around 4:30 (the lovely Aunties Mary and Sheelah were with the boys at our house), B looked much more rested.  He was sitting with his back almost against the wall, propped up with pillows, and his feet flat on the bed, knees up. He hasn’t had the energy to sit like that (or the ability, with the angled bed) for a while. He looked nice and pink and relatively normal, except for the few times he’d look away from my face and I could see he was seeing something in his eyes I wasn’t.  It was almost like he was blind and couldn’t see past his eyes, if you know what I mean.  It’s scary, but he says it’s easier than focusing sometimes.

So he had napped for a good chunk of the time I was away.  We just sat and talked, he had his dinner, Nurse D came in to be a vampire and take some blood to check that there are no infections in his central line.  That’s the worst part, because D had to take it from B’s poor left hand, which has about 8 pinpricks on it where they’ve had to do that.  His veins there aren’t so hot, but D got it in and done relatively quickly, tho B did hurt a bit from it.

Tomorrow is hair washing day, which I’m slightly dreading in case we have hair-falling-out issues. But onward and upward, right?  Oh, his numbers from this morning are….WBC are at 0.2 (admission level: 101.5), reds are 6.8 (admission: 7.7, remember he was anemic when admitted, they like those to be closer to 8 or 9), platelets 22 (admission:117), and neutrophils (a type of wbc) are at 0 (they didn’t have an admission level in the chart I looked at).

So we’re getting closer.  Tonight was the beginning of day 6 of chemo, last chemo of first round will be the Friday morning dose.  Seems so far away, but as Aunt Sheelah said tonight, this week has totally changed over the week, and it has.  We’re in more of a routine now: I’ve worked out that I’ll go in on the Dart right after dropping Eoin at school, and Magda will get the boys from school and I’ll be home around 4:15 every day, maybe later.  Those are the best times for B, it’s when he has the most energy and it coincides so well with school.  Weekends will be a bit different, as will Paddy’s Day and the day after, but we’ll work that out later.  I want to be there early on Fri morn, as he gets the last dose of the first round.  Yes, I know it’s 7am then, but I feel like I should be there for the momentous occasion.

He’s in a better headspace right now, which is great.  He is looking for a good app for radio on his HTC, the one he has he doesn’t like, a big step when he said that he’s feeling overwhelmed by music a few days ago.  I’m going to get a few podcasts for him overnight (Wait Wait Don’t Tell Me, Stuff You Should Know, and I’m asking on Twitter for a good tech podcast) and we’ll see how that goes.  They’re not too long, and he can pause and rest any time he wants.

Had a funny moment with H, one of P’s classmates moms who I saw today.  She said “I don’t pray but all my good thoughts are headed his way.”  I realized that’s totally the Educate Together way…light on the praying, but all good vibes.  They’re working so so well, so if you could just keep ’em coming a little longer, it would be great.

Today’s shoutouts: the lovely Aunties, who are absolute stars; the Gibbons family for the hospitality and kindness today; the Delahunts for their hugs; Helen just for being able to say hi and park in our driveway; Dr M for being straight and filling me in on things; and the lovely Nurse D and L, for taking such great care of B.  Oh, and DOUBLE thanks to Mary, for the minestrone soup that was gorgeous (and is now gonegonegone.  I need that recipe!)

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