Life, the universe, and lunch

Heck in a pink Hilfiger

So today we had an all day meeting at work with some outside contractors, and I decided to be almost over the top (i.e. over the top for anyone else but me) and wear my new pink Hilfiger (complete with 80s double cotton powder blue insets, ooo!) Amazingly, it garnered almost no commentary, but whatever...

The meetings were okay but in the afternoon I picked up a voice mail from the nursing home, Tammy had been unable to eat breakfast or lunch, and was completely distraught, bawling, and getting lots of comfort from the social worker. Oi! How to deal with this during a workday?

Backstory: Tam's been having more and more trouble eating lately. For more than a year the nursing home has been pushing for a feeding tube, but in the beginning it wasn't really necessary and her mom and I surmised it was just the nursing home looking for the easy out, as opposed to dedicating somebody to the (admittedly difficult) task of spoon feeding her every meal. Their concerns even had some validity, as she had been losing weight continously from the time she got there, but here's the point -- unlike Freeport Hospital, they were not giving her any supplements between meals or even giving her higher calorie meals. People with Huntington's, and Tam's no exception, often have uncontrolled movements that cause them to burn extra calories. At the third round of feeding tube meetings (the first was by phone, the second a family meeting where we were ambushed -- they said it was to talk about what the Huntington Society could do to help train their staff, but no one from the HSC was there and all they did was talk feeding tube), we talked about her calorie needs and they agreed to put her on supplements (Boost, Ensure; their brand is called Resource) between meals. Well wonder of wonders if that wasn't working -- officially she never regained more than 2.5 kg, but while having her home every weekend and getting her changed I could see major differences on her frame and it was great!

Unfortunately, it was also short lived... she's looking pretty thin and gaunt again and is definitely having more troubles eating than she used to. So we had the fourth family meeting a few weeks ago and agreed that it is now time to do this feeding tube thing. We told them our concerns though, about it being an easy out for the nursing home, but they were adamant that they will not change their resource planning and will still have a nurse dedicated to feed Tammy at each meal. The tube is just there as a supplement, and for those days when Tammy just can't eat (because they will happen, more and more unfortunatley). Presumably they won't change that without talking to us again, but I should follow up on that presumption to be sure (which I only just thought of now while typing).

So anyways, we were scheduled to meet a surgeon tomorrow to discuss the tube and were told that the surgery might even be done the same day, so today's news while sobering, was not a super duper crisis. The weird thing is that the surgeon's office has not called the home, or me, to confirm what time tomorrow this meeting will happen, at the least let's hope they give me enough time to actually get Tam to her appointment. (You think!?)

So yeah, I'm a bit aloof at work for the rest of the day, and trying to coordinate dinner with Bonnie tonight (happy birthday Bonnie!) to boot. I called the home at 6:00 to see if Tam was able to get dinner down, because if she hadn't I'd have to cancel with Bonnie and see what headway I could make feeding her. (They try to feed her sitting up but I've been feeding her laying down for years with far more success, so I could probably have gotten dinner into her in the comfort of her room had they been unable to manage it.) Yahoo! Tam ate a dinner and a half and I don't have to cancel with Bonnie, but then it turns out that she couldn't get a sitter and had to cancel with me. That's what I get for making plans with her on short notice (but it wasn't my fault you see; I'd e-mailed her last week not knowing that she didn't have that address anymore, and it was only by luck that she e-mailed me her new address on Tuesday and I got a chance to re-invite her). Why can't life ever be simple? Because then it wouldn't be any fun... d'uh!

So what did I do after work tonight? I went to Roxannes of course... Hey, the shirt demanded that it be seen somewhere, and who am I to argue with a shirt? It was actually pretty cool, I met a girl visiting from Halifax and chatted her up for an hour or so, and then an old friend came over and gave me shit for talking to her best friend from out east. Teehee. So of course I bought a dance -- I don't argue with fate much either.

Footnote: I have never had so many conversations with so many people as the night the pink shirt debuted at Comfort Zone paired with my "I Support Single Moms" t-shirt (with a silhoutte of a stripper on a pole). One guy who was introduced to me on the patio told me how much I sketched him out on the dance floor, then how surprised he was to meet me and find out I was cool. That should probably worry me but fuck it, I'm proud!

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posted by ...K @ 11:38 PM