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Our dd is scheduled to have some serious surgery in the coming week. The doc will be fusing C1 to C2 (cervical one vertebrae to cervical two); and possibly having to anchor these to the base of her skull). Once the surgery is complete, she will have to wear a Halo device for 90 days. (Hopefully a non-invasive halo instead of the standard halo device.)
Thus far, there's been no one around here who's had a similar situation with their child. I've asked the doc and his assistants who don't know anyone as of late who's had this done. (The situation is pretty rare.)
I've done some armchair research on the internet and found a couple of blogs---having even exchanged an email with one mom who's child had this some time ago. But, only one exchange with her and feeling pretty frightened for this entire thing. Do any of you know---or even been through this type of procedure before? Have any of your children had to wear a halo---specifically a 'Non-invasive halo' which consists of many velcro type straps, rather than screwing the device to the head....
This is frightening enough, but not having much info from anyone is making it worse...
Thanks ahead of time....
Sincerely,
Linny
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Ahhhhhh.....ispoke to soon. She had to go back into brief surgery to place an invasive halo on her head. I was very sad about this...still am.,but she's doing alright. Just looks like she has a swingset on her head. Sigh.......only 85 more days to go. Will be in the hospital for a few more days.SincerelyLinny
Oh, Linny, I am so sorry they had to take your precious little daughter back into the OR. That must have been so scary for you! But at least they put her out for the procedure. I wasn't so lucky back in 1968 when they drilled into my skull to place the Halo -- they gave me a shot of Demerol, and that was it; they didn't even bother using any lidocaine to numb my scalp. (Which is why I referred to it as a barbaric procedure in a previous post!)
I'll be sure to remember you both in my prayers tonight. Take a few deep breaths, and remember that we care about you! :loveyou:
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Despite having to make a trip to the ER because it was too late to talk with the ped; she's handling this better than I ever thought.
The trip to the ER was because one of the pins seemed infected; and it was. Oral antibiotics for 10 days. Makes me wish they were putting her on a low-dose of antibiotics for much longer---even though I know docs hate to use antibiotics any more than they have to.
Odd that they refer to the 'pins' as they do. "Pins", sounds so delicate; when, in fact, they're actually pretty large screws. I think she's so brave. There's no way I could tolerate this so well. While she's delayed and non-verbal for the most part; docs and therapists agree she seems to understand quite a bit.
With that, I've tried to explain this stuff to her; realizing at her age it would difficult for even a normal child. But gee, to see how her head is almost suspended? Just too weird to me. I get the 'why'.....just don't understand why such a barbaric procedure is still in place....
Sincerely,
Linny
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Linny, it's so amazing how small children are much more resilient to surgery, invasive procedures, and pain in general than adults are. I've taken care of quite a few little ones who were in full-length spica bodycasts...from their necks down to their toes. After an initial period of adjustment, they all just acted like it was another day at the park or something! Even young teenagers can bear a lot more discomfort and outright pain than adults.
I'm sorry to hear one of the screws caused some infection -- that's really common, by the way, with any type of hardware instrumentation that has an opening through the skin. Hopefully the round of antibiotics will knock it out.
I know the invasive Halo is a pain...and pretty scary to see, especially when it's your own child who's wearing it. But it does provide more stability than the noninvasive one does. Hang in there, Mama -- you're doing great! :cheer:
Found out today we're able (qualify?) for in-home physical therapy for the next three months! YAHOO! I was told by more than one source we'd not be able to have ANY PT during this time; yet, here we are with not only the PT, but able to have it IN-HOME! Soooo much less of a risk by not having to transport her to and from. In fact, we were told by the PT at the hospital to take her out as little as possible because of the risk of a fender-bender, etc. At least the house is big enough to allow her more room than the home we recently moved from.
She's doing alright. Only had to have one dose of pain meds in the evening over the last two nights. (Tonight, looks like she won't need any. :) )
She's already sitting on her knees and trying (more than once) to stand up. I can't allow her to stand yet; afraid she'll topple over---as has happened one time while on her knees. (Made her cry.)
The PT says she'll be doing exercises to help her retain at least a bit of her leg strength. I hope so. She could walk well prior to all of this. (sigh)
But, overall, despite the thing is SO barbaric...she's doing well. Let's hope it all continues in this positive direction. THANKS TO ALL OF YOU FOR SUCH INTEREST AND KIND WORDS/PRAYERS/THOUGHTS. (((((HUGS))))
Most Sincerely,
Linny