Raquel, a nurse and I went to another team meet today. It was fairly uneventful as we have little to hammer out. Well, there are lots of issues, but nothing seems urgent.
Eyes - Raquel didn't open them till after noon, very much putting in jeopardy her being able to make the hour car ride in the muted gray Vancouver weather. Just as I was leaving she basically opened her eyes and was full of enthusiasm. So she had to come.
Hypergranulation tissue - a large gooey skin fold that is trying to push out or wall off the g-tube, often secreting a bloody drainage.
Teeth - even though now Raquel lets us brush her teeth every second day. The odd days are full of screams and torture as we are forced to hold her down and wait for the pursed lips to release enough to get a brush at the thick layers of plaque. We certainly need a serious clean for her. It's just that now we aren't in there popping blisters everyday (although I did pop one on her lip today which is an anomaly of late) getting in her mouth is just one of those fights we've let go and now it's at the edge of being a big issue.
Pain - She really hasn't had much in the scale of what was going on from Spring to her birth. So I think if we really dip into an extended zone of suffering I'm very worried we'll take a long time to get on top of it or ahead of it. It could be that this is the first time I've not tried to ween her of it her pain meds and when 'it' hit the fan we were way behind. Don't really know although I'm sure, if she looses the skin on two feet two knees and some eye issues at once with a nice little esophageal blister we're screwed.
Nutrition - We'd really like to put her on some blended people food, not her caned diet of sugar vitamins and daily required dose of everything else the body requires. One can't really argue that it's not working well, as she is thriving for the better part of 6 months. Since EB runs in virtually every level of her body and if one area falls it's like domino's. So breaking up a good thing is something we're dragging our feet about.
Maybe it's the time required to process all that food and bag it, considering we usually only plan for dinner that day for the rest of us?
Maybe it's the cost of such a machine that makes the food fine enough to get past the G-tube?
Maybe I'm worried she'll get bunged up from carbs or whatever and ruin what has been the only place she's never had an issue?
Like everywhere else that she can scar. If her intestines get all mangled and blistered the nutrients then have a hard time being absorbed through the hardened and deformed lining. Like with scars everywhere else it only adds and gets worse.
To liquid diet of easily digestible food or not to liquid diet of semi easily digestible foods?
On top of this. Her daddy and less faithful blogger has become the bad guy in the house hold.
It used to be that she'd say no daddy when the bandages were prepared on the table for when I came home from work to do a dressing change. Now it's about every other time I'm around that she'd rather have anyone else then me. The only time she really comes for daddy is when she hears Cordelia screaming with laughter and wants in on the action. Just as soon as she arrives as the action stops, it's over.. Most of the kisses I steal from her are through silk padded hands flailing to injure. Or she'll just cover her mouth like the speak no evil monkey when she knows I'm about take a peck.
Ren will get one and as Raquel hangs in her arms I'll look to her and she's already sealed off the soft wet wonderful family goodbyes or hellos with her palms as she peers wide eyed as if to suggest you ain't get'n noth'n daddy!
Some times I think it's a game she plays with me, but sometimes it's clear by the frown that mimics my forehead under duress that I know there's little affection for the guy who pops all the blisters and squeezes the pain into her body as the fluids are pushed out.
hmmm maybe there was more to add than I thought.
The great beautiful wonderful Simona showed up this evening for Coco's party baring some small plastic things, at least now when I throw them out I know GVRD doesn't have to open another landfill in a small arid corner of BC..
haha she'll kill me for that..
But it was great as she stayed late and had Raqu on the cusp of sleep so I have the mind and energy to write. So thank you. I guess everyone else can tell, I missed her being around by the hard upper cut.
|my two accidental sailors|