Q, redefined
So about those medical appointments. Q saw a rehab doc this week at the Children's hospital. She watched him walk and was quite engaging with him, and he with her. She sent us off for x-rays and then sat down to discuss the findings.
Last year this time, Q's left femur was about fifty percent subluxed, or "out" of the hip socket. This year it's about 2/3 out. The plan for now is to get consults scheduled with ortho and neuro-ophtho and think about when to have surgery. If it's indicated (and it surely will be at some point), the surgeons may be willing to do both hip and eye corrections at the same time, in part because I'm trying to be mindful of Q's lifetime chances of needing general anesthesia; it's just a good idea to manage these things if one has that option. However, the hip surgery is longer and so that may rule out any other simultaneous procedures.
Q is on a four day titrating plan for Baclofen - going up to the max dose for him at this weight and height: 20mg, 3x/day. We'll talk in a couple of weeks, his newest doc and I, and she may at that time opt to add a tiny dose of a benzodiazepine during the day to hit the receptors that the Baclofen does not. Things that would indicate he's not doing well on the new dosing of Baclofen: increased sleepiness (beyond the usual 48 hours from a newly increased amount), increased drooling, any sort of sustained decline in function. It's pretty typical for him to have had that initial sleepiness, I haven't noticed any change in drooling with these meds adjustments, and any change in function has disappeared within a couple of days, as he wakes up and goes on to build more muscles as the inappropriate tone subsides.
Good things I know now that I didn't know before: he's 37 lbs and 42 inches. He's growing! Yay!! This new doc is not opposed to placing a Baclofen pump sooner rather than later - hopefully skipping past the potential liver toxicity which can be seen in kids who've been on their maximum dosing for years. She also thinks he needs to have AAC as soon as it can be managed and a wheelchair he can drive, baby! (I'll be needing the remote cut-off switch for when he decides he can safely drive himself right up into the mountains, thanks.)
AAC: Q has been on a wait list for more than a year. I just discovered this. Since he already has speech therapy (for feeding) he had to go through the whole wait list thing again. In the meantime, thanks to all you kind and lovely people (you know who you are), he has quite the iPad cache of games and goodies. His fave, so far? The free "Yes/No" app - he can answer yes/no questions easily and loves it so much that we're about crazy from it. In a good way. You know.
Motorized chair: We've had a "starter" version - ancient car seat with motor and wheels plus a button for him to push to make the chair go. The incredible noise, which probably violates city ordinances, has been, how to say? Offputting. For Q and for the rest of us. The very good news - his PT thinks he may be big enough now for some of the demo options they have on site. Or I hope they have them on site.
More good news today: Q has a caseworker through the Department of Developmental Disabilities! And the guy is coming out to the house on the seventeenth to do an eval and get the ball rolling for paid care hours! YAY!!! And also? It has only just occurred to me that now I need to come up with people to actually be certified and to provide the care. Preferably by March 1. Another action item for the list, then.
I'm not so much enjoying the prospect of Q having this surgery. The cutting and stitching up and recovery and more meds and pain and casting and general discomfort and wow, could we skip this and I'd be fine. However. If the rehab doc is correct, and I believe she is, changing that angle between the trochanters and heads of the femurs plus good management of tone should equal a real change in the trajectory for Q. He will likely be far more comfortable in nearly any position, he should stand straighter (a very real issue for him as he's trying to work while upright), and most importantly, it removes much of the worries going forward that one often has about kids who are experiencing such a painful presentation - including joint and bone integrity. Will this help him walk? In so far as he's already able, yes. (Try walking with your knees turned inward and clonking each other.) But the goals for Q mean that currently his mobility and any walking/standing/sitting issues are separate. He'll need his independence, as much as he can gain, and that will be with motorized wheels. If he can eventually step up a couple of steps at a time, with help, and assist in transfers, I will be ecstatic. Truly. These things would be huge. Would I like for him to walk? You betcha! And if he does, great! But I'm not tied to that as a marker for his success. Q's success will come out of the fact that he's a hard worker with a great smile and an even better attitude. All that he brings to the table coupled with excellent therapists who are committed to figuring out how to get him out so he can play, talk, tell us what he wants us to know about him, will define how far he can go. The sky's the limit.
I know I've forgotten a thousand things, so I'll pop back and issue addendums when I can. I'm headed for sleep - such an utterly exhausting week. I've pushed off considering the logistics of all this for now (spika cast, transporting kid in cast, etc.). Plenty of time to attend to that when I've got more info. No sense borrowing trouble when it's already quite interesting, living here.
I so hope you're looking forward to a lovely weekend, all. More apologies from me re: being so ding-donged out of touch. I'm even sorrier that it appears there's no end in sight. Hey - I'm issuing a standing invitation to come help me scrub down Q's equipment. I could seriously use the extra hands here and we can chat! Whaddya say?
XO, prayers, and peace.
Last year this time, Q's left femur was about fifty percent subluxed, or "out" of the hip socket. This year it's about 2/3 out. The plan for now is to get consults scheduled with ortho and neuro-ophtho and think about when to have surgery. If it's indicated (and it surely will be at some point), the surgeons may be willing to do both hip and eye corrections at the same time, in part because I'm trying to be mindful of Q's lifetime chances of needing general anesthesia; it's just a good idea to manage these things if one has that option. However, the hip surgery is longer and so that may rule out any other simultaneous procedures.
Q is on a four day titrating plan for Baclofen - going up to the max dose for him at this weight and height: 20mg, 3x/day. We'll talk in a couple of weeks, his newest doc and I, and she may at that time opt to add a tiny dose of a benzodiazepine during the day to hit the receptors that the Baclofen does not. Things that would indicate he's not doing well on the new dosing of Baclofen: increased sleepiness (beyond the usual 48 hours from a newly increased amount), increased drooling, any sort of sustained decline in function. It's pretty typical for him to have had that initial sleepiness, I haven't noticed any change in drooling with these meds adjustments, and any change in function has disappeared within a couple of days, as he wakes up and goes on to build more muscles as the inappropriate tone subsides.
Good things I know now that I didn't know before: he's 37 lbs and 42 inches. He's growing! Yay!! This new doc is not opposed to placing a Baclofen pump sooner rather than later - hopefully skipping past the potential liver toxicity which can be seen in kids who've been on their maximum dosing for years. She also thinks he needs to have AAC as soon as it can be managed and a wheelchair he can drive, baby! (I'll be needing the remote cut-off switch for when he decides he can safely drive himself right up into the mountains, thanks.)
AAC: Q has been on a wait list for more than a year. I just discovered this. Since he already has speech therapy (for feeding) he had to go through the whole wait list thing again. In the meantime, thanks to all you kind and lovely people (you know who you are), he has quite the iPad cache of games and goodies. His fave, so far? The free "Yes/No" app - he can answer yes/no questions easily and loves it so much that we're about crazy from it. In a good way. You know.
Motorized chair: We've had a "starter" version - ancient car seat with motor and wheels plus a button for him to push to make the chair go. The incredible noise, which probably violates city ordinances, has been, how to say? Offputting. For Q and for the rest of us. The very good news - his PT thinks he may be big enough now for some of the demo options they have on site. Or I hope they have them on site.
More good news today: Q has a caseworker through the Department of Developmental Disabilities! And the guy is coming out to the house on the seventeenth to do an eval and get the ball rolling for paid care hours! YAY!!! And also? It has only just occurred to me that now I need to come up with people to actually be certified and to provide the care. Preferably by March 1. Another action item for the list, then.
I'm not so much enjoying the prospect of Q having this surgery. The cutting and stitching up and recovery and more meds and pain and casting and general discomfort and wow, could we skip this and I'd be fine. However. If the rehab doc is correct, and I believe she is, changing that angle between the trochanters and heads of the femurs plus good management of tone should equal a real change in the trajectory for Q. He will likely be far more comfortable in nearly any position, he should stand straighter (a very real issue for him as he's trying to work while upright), and most importantly, it removes much of the worries going forward that one often has about kids who are experiencing such a painful presentation - including joint and bone integrity. Will this help him walk? In so far as he's already able, yes. (Try walking with your knees turned inward and clonking each other.) But the goals for Q mean that currently his mobility and any walking/standing/sitting issues are separate. He'll need his independence, as much as he can gain, and that will be with motorized wheels. If he can eventually step up a couple of steps at a time, with help, and assist in transfers, I will be ecstatic. Truly. These things would be huge. Would I like for him to walk? You betcha! And if he does, great! But I'm not tied to that as a marker for his success. Q's success will come out of the fact that he's a hard worker with a great smile and an even better attitude. All that he brings to the table coupled with excellent therapists who are committed to figuring out how to get him out so he can play, talk, tell us what he wants us to know about him, will define how far he can go. The sky's the limit.
I know I've forgotten a thousand things, so I'll pop back and issue addendums when I can. I'm headed for sleep - such an utterly exhausting week. I've pushed off considering the logistics of all this for now (spika cast, transporting kid in cast, etc.). Plenty of time to attend to that when I've got more info. No sense borrowing trouble when it's already quite interesting, living here.
I so hope you're looking forward to a lovely weekend, all. More apologies from me re: being so ding-donged out of touch. I'm even sorrier that it appears there's no end in sight. Hey - I'm issuing a standing invitation to come help me scrub down Q's equipment. I could seriously use the extra hands here and we can chat! Whaddya say?
XO, prayers, and peace.
1 comment:
I love reading your posts. They're almost like reading a book in a foreign language that I know. If your case worker is a good guy, that will be So Nice!!! And getting care hours sounds like it should be a shoo-in. I hope the right people turn up to fill them.
If the hip surgery is the same one that kids with spina bifida have had in the past, the recovery is not something to take lightly. 6 weeks in a cast that keeps your legs spread out makes all sorts of things tricky. I've heard of people using wheelbarrows filled with pillows for getting around. There are, of course, wheelchairs - but doorways can still be a challenge.
WV: ichitiod. Sounds like something to do with the itchy feeling in one's lower limbs that simply can't get scratched in a spica cast
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