zen.org Communal Weblog

He’s getting stronger, def.  The boys visit was great, but I think it tired him more than he thought it would.  The collective energy of a 4yo and a 9yo is pretty intense.  Other Nurse D (we have two Nurse D!) was lovely to the boys, and they liked being there.  Only a half hour, but I think we’ll wait a while on any other visits…

We walk the ward, back and forth.  It’s about double the length of our house, so not very big.  I beg each day to let me bring him outside, or even downstairs.  Nope, not even with a mask.  “He’s neutropenic, nope.” /sigh

While he was up this morning, he had the window blind open for a while, then the sunshine started to hurt his eyes.  Wondering if I should bring in his sunglasses….

His numbers haven’t really shifted this week.  He got 2 pools of platelets while I was there today.

WBC: 0.4

Hg: 8.9 (that’s with no blood for about 16 hours)

Platelets 31

We’re adding a new number here: Neutrophils.  This is the biggie now…right now they’re at 0.0.  They are the numbers we want to see coming back up, slowly but surely. I don’t know the range that they’re looking for, but that’s now the number to concentrate on.

As for how much longer, we just don’t know.  I thought it would be another week or so, but I was told that it could be another 4 weeks.  It all depends on the neutrophils and when everything starts to recover.  B is getting the blood because his marrow isn’t making blood right now, and they have to keep the levels right (same with platelets, if even higher to protect against infection and hemorrhaging). The docs said that they’re expecting the numbers to start to rise in the next week or so, but if they haven’t started, they’ll give him a bit of growth hormone to see if that kicks the marrow back into gear. One doc said that caffeine is a marrow stimulant, but I don’t think I’m bringing him any triple espressos.

So for now, we sit and wait.  And wait.  Gin rummy is still fun.  We were working on a project today that turned out to be nothing, but hey, it exercised our brains for a bit. Books are still out right now.  I might teach him to knit, if he doesn’t watch his fingers….

Today’s shoutouts: Joanne, for the dinner (and cause she said she wanted a shoutout!); Nurse D and her lovely curly hair, no matter what you others think; Miriam and Roisin for coming all the way out here with a cottage pie for the freezer; and Magda who gets a perpetual one, cause she’s my biggest supporter right now, and I hope we can be hers (kick butt in volleyball!!!)

I had a great visit by *both* boys this morning; Thanfully, Elana was able to get them in (despite horrid traffic) for a little while before having to get them to school a little late.

Like any 9 and 4 year old boys, they’re not always sure what to talk about, but they’re able to share information when prompted and volunteer random unsolicited information, too. 🙂  But the best part is just seeing them being themselves, interacting, talking, et al.  We’re unsure how often I’ll be able to see them (maybe not again for couple of weeks or more), so I’ll relish the visit for a while.  I’m wearing a “Happy St Patrick’s Day” pin badge given to me by Patrick, which I’ll keep on for the day.

My fevers have been improving a little … last night I got a small one, and started to feel a little cool, but in contrast to say a few days earlier, I didn’t have the shaking shivers and chills.  I’m hoping this trend continues.

Had blood samples taken at 6am this morning, like normal.  Amazing how much blood they’ve taken out of me over the last few weeks!

My radio routine in the hospital is starting to take shape, mirroring the habit I use while working at home.  Morning Ireland on RTE Radio1 starts the day til 9am, then I switch over to Radio Nova 100.3 for awesome music for an hour or so.  Then I switch to listen to Tom Dunne on NewsTalk 106 from 10-12.  When Tom’s done (ha ha, apologies to Tom), switch back to Radio Nova for the rest of the day.  This doesn’t mean I actually listen to the radio this much here—it’s just the pattern of time and station choice.

Just head that Michael Stipe of REM composes songs on his mobile phone.  Some time ago Bono lost (?) a laptop with lots of lyrics and such on it; I wonfer if Michael S had any sort of encryption on his phone?  A decent password?  (The intelligent thief would open the phone up and get the memory card out of it to put into a stronger reader.)  I’m sure he’s well aware of the risks and has some way to protect his work.

Looks like a beautiful day outside; I’ve got the window blind up just enough to be able to see the bay (sitting up in bed), but keeping the bright sunlight from straining my eyes.  I like the diea of the boys being able to play outside and a) have lots of fun being outside, and b) expel tons of energy so they go sleep early and for a long time. 😉