28
May
2010
Be warned. The picture and description below are rather graphic.
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(Well, actually, they’re just gross.)
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… Okay, enough warning. By popular demand… the snotmonster:
This is actually not as bad as it has been. Over the last weekend and earlier this week, if we turned our attention away for too long, she would end up with a trail of snot all the way from her nose to the mat or blanket beneath her. But at the same time, as Mom said, that is actually the worst of her symptoms. She’s still acting a little run down, and the glands in her neck are still kind of swollen, but she hasn’t had any of the other sorts of symptoms that we associate with her being sick, like extra O2 requirement, green or yellow secretions, elevated heart rate, etc. And she has definitely been acting more lively as the week rolls on, so we’re pretty well convinced that she’s on the mend. We may call the pediatrician’s office if we don’t see an improvement in her actual symptoms soon, but all in all, it’s been one of the least stressful illnesses she’s had.
Posted: our little witch
27
May
2010
Miss D has had a cold since last Friday night. Knock on wood, it’s thus far been confined to her head, and has not interfered with her breathing or oxygen needs. We have though gone through nearly 3 whole boxes of kleenex, and her poor little nose is alternately red or disgusting.
Aside from very poor sleeping (down for a few hours, up for a few, tired looks the whole day) and crabbiness last weekend, she seems to be handling it all right in other ways too. We have had a few minor puking incidents precipitated by gagging on post-nasal drip, but much fewer than you’d really expect.
In unrelated developments, she’s gotten a bit more demanding recently trying to get someone’s attention. Especially if she’s on her vent, she’s able to make quite a bit of noise until someone who may be occupied elsewhere looks over to see what it is she wants.
Nursing woes continue (the big surprise will be the day they haven’t). Our night nurse is retiring in July and they have yet to find any hint of a replacement. Our other nurse has apparently injured herself in some way and will be out indefinitely. We’ve had a new (day) nurse testing the waters the past couple of weeks, but he (yes, an actual guy!) can’t really do the schedule we want, so it’s a stop gap at best.
All of the people from the school have now paraded through. They’re supposed to have their reports ready for next Friday, when we have a meeting to discuss them. Then they will go off and spend 2 weeks writing the IEP so we can have another meeting to actually go through that. Hopefully that’ll be the end of the process.
We’re also in the process of investigating setting up a special needs trust for Dorrie. In order to keep her Katie Beckett medicaid waiver, she can’t have any assets in her own name. But if we set this up then money can go to the trust instead. (Or directly to us, which is easier, but doesn’t work for everyone.)
Posted: moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
16
May
2010
I’ve gone away a few times for classes over the past year. But when I did, Grammy always came over to help with Miss D and give daddy a little bit of relief.
Unfortunately Grammy was unavailable this week when I went away overnight for work (sorta). I left around 6:45am on Thu and got back a bit before 8pm on Friday. Now, we did have a nurse who showed up on Thu night, but that’s still some very long days with Miss D.
It sounds as though things went pretty smoothly, however. Dorrie slept in on Thu, managed to escape a trach change (a scheduling snafu meant daddy’s planned assistant wasn’t able to come at the intended time, and barring an emergency situation it’s far better to have two people at minimum) and played with her toys and with daddy all afternoon and evening. Her PT called in sick on Fri morning, so Fri was much a repeat of Thu as far as little miss was concerned.
She was acting pretty tired by the time I got home on Fri, and we both thought she would go down for a late nap. But apparently my presence rejuvenated her, because instead of taking a nap she got her second wind and stayed awake until 2am. With no nap!
Posted: our little witch