Yesterday & today he's been remarkably shaky with lots of tremors: hands, arms, legs, head, whole body. Docs are saying we should try valium for tremors. Also increased ankle clonus the past couple days. Got both legs going, seemingly on purpose, the other day. Seems he was getting a kick out of the jiggling. AFO's went on & stopped the clonus.
IV got removed last night (yeehaw), so Denise & I gave Larsy a bath this morning. He loved it & the tremors stopped for a while.
Denise & Carylbeth have been huge helps this weekend; would have been much worse without them. So many thanks. Coffee in the morning, jägermeister & chocolate at bedtime. I am well loved & cared for, indeed.
Joa & Andey stopped by for an hour & a half yesterday; Andey needed to sleep much of the day because of work.
I've been here with Lars since Friday morning. Andey's done with work weekend now so I'll go home tonight to be with Joa. Joa has a sibshop. tomorrow in Beverly, which Denise is taking him to so both Andey & I can be here for Lars' tests & to talk with docs. They're probably doing the LP tomorrow, and we should be getting word about when g-tube surgery will be scheduled. We have no idea if that can be done this week, or if the O.R. is scheduling several weeks out.
I'm familiar with g-tubes from working with special needs kids who have them. Several of you have asked, though, so I found a dad's web page with pictures of his guy's g-tube, if you want to check it out, it's here. Lars has had an ng tube (up nose, down to tummy) for the past couple days. He's received most meds through it, and did continuous slow feeds for 18 hours yesterday & last night, to see if he could tolerate that. Today they're trying a couple bolus feeds (5 oz. at a time) to be sure he does well with those.
What an amazing thing, not to have to fight to shove syringes full of yucky tasting medicine into Lars' mouth twice a day. Not to worry if he doesn't drink enough. Just bypass the mouth. And he can still eat all he wants.
I've officially re-named Dr. Kindeyes. She shall heretofore be known as Dr. Kind&Competent. She has been absolutely amazing. Denise had a good descriptor for her: "there's just no party line." She's a dream doctor, in my book.
Kind&Competent is trying to get Thinksdifferently to start Lars on neurontin pre-LP, since it'll take a month to creep slowly up to therapeutic doses. Andey found an interesting study on neurontin (gabapentin) with kids like Lars. Here's a link for it. The study hypothesizes that "visceral hyperalgesia" is a source of chronic unexplained irritability and pain in kids with severe neurological impairment like Lars.
"'Visceral hyperalgesia' is a pain state caused by central sensitisation, that leads to abnormal perception of both painful stimuli...and non-painful stimuli..." (reference here). In the study they treated with neurontin & the kids felt better. Worth a shot, especially with a benign side effect profile.
We've had Nurse Biznis most of the weekend, who is competent enough, but Swell Nurse just came in & that means we get her from now until 11:00 & that's just, well, swell. She's one of our top three favorites, along with Power Nurse & Nurse Gurlfriend.
Did I tell you about Nurse Gurlfriend? We had her several weeknights in a row. So smart & sweet, 20-sumthin', she says to me one night, "You know, Lars asked me to be his girlfriend." "He did?" says I. "What did you say?" "I said yes."
By the way, I won't gross you all out with gorey details, but if anyone wants to know what havoc nuclear/radioactive scrambled eggs wreak as they exit an almost-three-year-old's system, just ask. The one with the most stories in the end wins.
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