When we arrived at the appointment they took her back to get an x-ray of her hips. This was the first time I couldn't go with her since I'm pregnant. We waited and waited and waited. Two hours later, we finally got to see the doctor. The x-rays weren't good. He had brought in her x-rays from last March to give me a visual on how bad her hips have gotten, just in these last few months.
Her hips are not fully in the sockets. In fact, they are nearly dislocated. Each hip is about 70% out of the socket. There are a few reasons for this:
1. Tennyson does not bear weight on her legs. Typically, as a child learns to stand and walk, the ball of the joint "carves out" the hip socket and fits snugly inside of it.
2. Her muscles are very tight. Both her adductor muscles and her hamstring muscles are restricting the hip from being able to move fully into the hip socket.
Your adductor muscles are located on the inside of your upper thigh (where you groin is).
If your adductor muscles are tight, it can pull your legs together (and thus your hips away from the socket) and it can cause "scissoring", or criss crossing of the legs.
She needs to have surgery to correct the problem. It's been scheduled for October 16th.
She will have bilateral adductor release and bilateral hamstring lengthening surgery. I'm not going to lie, I'm not happy that she has to go through this surgery. She's pretty young to have this surgery. It's a soft tissue surgery. So no bones will be involved. The hope is that once these muscles are cut and "released" the hip will be able to move fully into the socket. Her doctor said that 65% of kids who have this surgery won't have to have the bone surgery later on and this solves the problem.
That's not even the crappy part!
She has to be in full leg casts for 3 weeks following the surgery! Followed by an additional 3 weeks of removable braces. She'll look something like this (although I anticipate her legs will be stretched much farther apart in a "V" shape):
She'll have enough room for me to put a diaper on her. I haven't yet figured out how I'm going to dress her. I think I might have to cut pants and shorts and put snaps on them so they can fit over the bar. And then there's Halloween - I'm going to have to get really creative with her costume this year.
She'll be in the hospital for about 3 nights. I've read that it can be a painful surgery, followed by muscle spasms. I pray she will recover quickly and with as little pain as possible. The doctor said she should be able to return to school after about a week.
I'm still mentally preparing for this next "adventure". If you are a parent who has gone through this surgery with your child, I'd love to hear from you!
Amy
I went through a similar surgery (hip resetting) and casting with a 9 yr old with CP complicated with MR and seizures (his condition sounds very, very similar to Tennyson's, from what I've read on your blog.) Not gonna lie, it was hard. One good thing about Tenn being the age she is is that she won't been too heavy to move, even with the cast on. They'll show you how to do the diapering at the hospital. What we ended up with was using a baby diaper with the tabs cut off as the first layer. We'd stuff it up inside the cast as far as we could in the front and back. Then we'd put a large diaper over the outside, around the entire cast. We never had any leaks or issues with this system, but I have heard of other people (with babies) having more leakage problems, blowouts, etc. Another thing you can do is use maxipads to add more absorbancy.
ReplyDeleteYou can also "petal" the rough edges of the cast with molskin or duct tape to prevent them chafing, especially around the groin. We never did it and chafing was never an issue, but I know it has been for other people. As for clothes with the cast, I can't remember ever putting any pants/shorts on mine. The cast and diaper kept everything covered anyway and he didn't leave the house much while he was casted. (When he did leave the house we used a little red wagon with lots of pillows to transport him since he wouldn't fit in a stroller of his wheelchair.)
There was a smell, mainly from the incisions and the dressings on them. After a while the doctors told us we could remove any dressings that were accessible so we fished around under the cast and pulled the stuff out, that helped with the smell a lot. I never found any of this particularly gross, but some of the others involved did, so be prepared for that.
What else... I've heard that cast coolers can be great, although we didn't use one. They do have an attachment for the kind of cast she'll be in. http://www.castcooler.com/spicacastlp.html
Positioning was a real issue for us. Especially since my boy needed to be as upright as possible to eat. The best thing we found was an old recliner chair. We also used a reclining shower chair some. At Tenn's size a bean bag would probably be a good option. You'll want to make sure you always put pillows and stuff under her legs, don't let the casts "hover." If she'll tolerate they'll tell you to put her on her stomach, especially at night, to prevent pressure sores. Mine wouldn't stand for that and we did end up with a couple of small pressure sores on his spine/sacrum, but after the cast came off they healed well.
I hate to tell you this, but I want you to be prepared just in case. I know have heard of kids who do GREAT after these kinds of procedures, but my kiddo was NOT happy about the cast. It took about 2 weeks for him to adjust to them and stop just crying and moaning all the time. He stopped eating and he wouldn't sleep and he ended up on tons of meds to try to keep him more comfortable. After about 2 weeks he basically adjusted and was happier, but he never did start eating like himself. He lost a lot of weight.
As hard as being in the cast was, coming out was harder. He was so stiff and sore he would cry if anyone jostled him, even with lots of meds on board. It was heartbreaking and we missed his personality, because he wasn't himself when he was so unhappy. That lasted for over a month of misery, giving pain meds around the clock, etc. He did like long warm baths and it seemed to loosen his muscles up. He regressed a lot with his flexibility and PT while he was in the cast but within about 4 months or so he'd regained it all and then some.
That's all I can think of at the moment, but by all means email me if you have any specific questions. If I think of anything else important I'll come back and post it. Just remember: it'll be okay. It will get better.
Thanks for all of this great info! I'm glad you shared the good and the bad. I definitely want to be prepared for it all. While I was reading about this on the internet, one Mom literally said it was the most horrible experience she'd ever been through! I don't think it will be the worst, but I'll definitely prepare myself for a long road. Did your son have an osteotomy on both hips? Thanks so much!
ReplyDeleteIt was only on one hip. He had a spica cast that went all the way down one leg and foot and to his knee on the other leg with a bar between his knees.
DeleteOur daughter, Livy, has a dislocated left hip. We just found this out a few months back. The doctor gave us the option of surgery but could not guarantee great results. This is something we will be thinking about for a while. She is not weight bearing now but there is always the possibility that she may one day. You are doing what is best for your child and that is so brave. Hang in there and be strong. This too shall pass!
ReplyDeleteI am hoping to avoid this surgery for awhile longer for my daughter. I hope it all goes smoothly for your little one.
ReplyDeleteGosh this has been really helpful to me. My son is having surgery in 6 months on his hips. He has low tone and does bear some weight and my understanding is that it's a different surgery - that they'll be straightening out his femurs. But - you've raised some great questions here as I realize I maybe don't completely understand the procedure. We've only had 1 appt to talk about it. So, thanks for getting my brain churning and I'll be staying tuned. I do hope her surgery goes well. Heather
ReplyDeleteI am so sorry your little one will be going through this. I saw a video on Exceptional family tv http://www.exceptionalfamilytv.com/ where a mom demonstrates modifying clothing and bathing her son in the same situation. maybe it will help you!
ReplyDelete