Monday, March 13, 2006

stuff Previsit 3/13/06

Pleural Effusion - a new medical term I learned this morning. Doctorese for "fluid on/around the lungs" but it's linked in case you want the doctorese definition. It's actually pretty interesting to me but I doubt many of you will want to read up on it.

I was just sitting here thinking about how life recently has been so, oh, what's the word? Varied? Variable? Anyway, my point is that I never know what's going to happen, never a dull moment. From an infant in the hospital to a teenager falling for the story of a con man kid to the joys of a new business (note: sarcasm intended) to trying to keep up with Randy's condition, which seems to change as often and as dramatically as Nova's.

Haha, I'm living a "full life." And I'll leave that at that.

I'm still trying to think of ways to benefit the Maeghan and Heidi Heart Foundation. I was hoping some of my local readers could give me some suggestions as to local companies that would want to donate, sponsor, or in some way help. Unfortunately, that hasn't panned out so well. It's a shame too, these ladies deserve the support. It's one of the purest causes I've encountered lately. Unfortunately too, I just can't get anything much accomplished with them right now. The clock is working against me most days. I have a lot of ideas, but no time to bring them to fruition.

Then there's my own charity, which has accomplished almost nothing so far. I had decided to give it up, because I just don't have the time or energy to devote to it right now. But right now, it isn't asking me for much. It sits there quietly behaving, so I'll defer that decision to a less stressful time in my life. I'd hate to dissolve it and regret doing so later. Besides, as soon as I got the idea to do so, I got an email from a previous donor (a fellow who donated a BUNCH of the photocuddlers) asking if I wanted more, because the company is going out of business (the photocuddlers co. not the donor's co.) and the prices had hit rock bottom - so I took that as a sign that I shouldn't give up on it just yet.

As for daily life - generally speaking I'm sort of clueless about a lot of what's going on with the kids. Many days I only see them for a few minutes. I try to catch up with what they're doing and how school is going and who has what projects or after-school activities, but it's hard. They miss me, I miss them. The concept of working out our priorities isn't going so well. But c'mon, you're not SUPPOSED to have to choose one child or another, and right now, that's exactly what we've had to do.

But this leads to out of the ordinary situations, for example, Kassi received a phone call the other day while we were at the hospital. It was from a boy. Boy's aren't really allowed to call her, I mean, she's ONLY 11, and she has a new "boyfriend" once a week. (Scott had her legitimately convinced until recently that she wasn't allowed to date until she was 30. She really believed him.) We walk in the door, and Ma starts the customary daily report on the evening's events and says that a boy called Kassi. gasp

Then says the kid sounded like he was 18 or 19. GASP

She tried to say it was kid from class, then it was a friend's cousin. Eventually we learned that it was a boy she met in an online game much like pictionary. The younger kids are allowed to play Yahoo games, but they aren't allowed to chat. So she and kids that are in her class play this game together. I didn't have a problem with that, even though they could chat at the bottom of the screen. Well apparently since I wasn't here and Grandma is computer illiterate, she figured she could get away with chatting with people other than classmates and GAVE OUT HER PHONE NUMBER.. Well, according to her, one of her friends gave it to this kid, who she still maintains is the friend's cousin who lives in Atlanta, but who can trust her now? So she's off the computer and off the phone and the Kassi watch is on high alert, level black and blue - which means that if she tries anything else, "so help me God, I'm going to beat you black and blue!"

Ugh. She isn't very afraid of me beating her, lol, but she does know she's in big trouble and better behave. I remember her age, and the next few years. I have a feeling that we'll be hyper-vigilant from now till hell freezes over. I think she can just give up on any hope she had on having fun between now and adulthood!

I'm all about some marathon-length posts lately eh?

I just got off the phone with Nova's nurse again. It's Linda, and we LOVE Linda (it was Vivian last night, we don't really care for her, but it's mostly just because she isn't outgoing and friendly enough for us to get a good feel for her personality - she seems perfectly capable, and that's what matters.

With heart babies, unfortunately sometimes the progress isn't so much in the numbers and graphs and charts as it is in how he acts, how irritable or calm he is, how hard he seems to be breathing, whether he's resting or not, etc... I mean, sometimes, they just need time to heal and get stronger, which is where we are with Nova since his infection has started to improve. Basically, today his improvement is all in his demeanor, based on completely subjective observation and not hard facts. The numbers themselves all look good, but mostly what she told us is that he's calm, he doesn't get so agitated when she has to do vitals and PTs, when he does get upset, he's easily calmed, his breathing looks relaxed... That sort of stuff. And, the doctors still (so far) haven't scheduled or (re-re-scheduled) the heart cath. They're feeding him a little more, I think she said 11ccs per hour now, and it'll go up again at 4, which is when we usually see him the first time during the week.

No comments:

Post a Comment