It's been a while - part 3: Hip Surgery

Yes, we scheduled it, the dreaded hip surgery.

We went to see the Orthopaedist and he said Sadie needs the osteotomy.  That's where they cut her femur and actually remove a chunk to re-angle her hip sockets.  It sounds pretty intense and I'm not looking forward to it.

The doctor said that normally he likes to wait until kids are at least 4 years old before doing this surgery, but that since Sadie is so huge, he doesn't mind doing it on her so young.  So, I guess that crazy hormone rush growth spurt is sorta good...although I'm pretty sure her hips are so bad because of the growth spurt in the first place.

I've talked to a couple of other moms who have been through this surgery with their girls, and the biggest thing I keep hearing is pain management.  Sadie won't be casted or anything, so I won't have to worry about that (thank God), but I have been told that muscle spasms can be pretty harsh.  I had (a different kind) major hip surgery when I was 19 and I remember the doctor had to cut through the nerves to do what needed to be done.  I still have weird nerve sensations on that leg.  For a long time there would be shooting pain as my nerves worked to heal and feeling was coming back.  It was very uncomfortable...and I imagine it'd be something similar that Sadie will experience.

We'll stay in the hospital a few days (hopefully not too many), then it's up to 6 weeks of recovery at home.  Being an online teacher, I really only get 3 weeks off in the summer, those 3 weeks will be spent doing this.  June 24th is the first Monday of my break and we'll be showing up to Phoenix Children's Hospital bright and early that morning!

Pray for us, wish us luck, whatever you can do helps!!

I'm terrified, but I'm trying to be positive and proactive in that I want this to rocket us forward in her physical abilities (like sitting), instead of set us back, like I've heard that it can do.

The Spasticity Clinic - Our Second Visit

If you read my last post about Sadie's latest Ortho appointment, you'd know the drastic news we were given about her hips.  This morning we visited Dr. Kwasnica again (she's the one who recommended the hand splints) and continued the conversation.

I told Dr. Kwasnica what Dr. Segal said (they are colleagues and know one another well) and she was as shocked as I.  However, she later said that he must really mean it to recommend surgery to a child as young as Sadie.  She said that Dr. Segal is usually cautious about recommending drastic measures, so we should probably take him seriously if that's what he's saying about a child as young as Sadie.

We also talked about, in the meantime, trying Botox injections in her adductors and then having her wear a brace.  Dr. Kwasnica agreed that if we have to wait for surgery anyway, we might as well do something in the meantime.  She said it would help us with diaper changing, and it would stretch her tight hamstrings.

But it's not going to prevent surgery.

So we made an appointment in the beginning of November to do Botox.  Then we will be fitted for a brace, that she will probably wear at night, to hold her hips apart and provide prolonged stretching.

And we will probably move to schedule surgery next time we see Dr. Segal.

Update on Sadie's hips-The Orthopaedist again

I'm discouraged.

We visited Dr. Segal today, like we do periodically, to take X-rays of Sadie's hips and discuss the progress of her socket development.  (here's the background about this  And here's the information about our last visit) It wasn't very hopeful.

First, the good news...

Sadie's feet are okay.  She only needs to wear the AFOs (ankle/leg braces) in the stander for now.  Once she starts school she'll probably wear them the whole time she's at school.

Her spine is okay, and her hands are good.  We are going to switch to wearing the hand braces at night, because she wants to use her hands more and more and the hand braces sort of inhibit her.

But her hips are getting progressively worse.

Dr. Segal looked at me gravely and told me that he doesn't think Botox would be enough help, and that snipping her adductors probably wouldn't even be enough at this point.  And he's concerned, because she's only 2.  He's changed his recommendation at this point to major surgery, he called it osteotomy.

Here's an example of what we have going on.  Sadie's hips SHOULD look like the left side.  But instead, they look like the right.  Well, hers isn't dislocated yet, so it's still in the socket, but it's straight like that.

What the surgery would do is cut her femur in 2 places, remove a big chunk and TURN that top part so that it's angled correctly like you see on the left.  Pins would be placed in her bone, no casts, but at least a 6 week recovery (that WOULD set her back some in her physical therapy skills), then pins removed during an outpatient procedure.

Sounds drastic, right?

And then he tells me he is even more concerned because he doesn't like to do this surgery until kids are at least 4.  I told him the earliest we could even CONSIDER something major like this in our lives would be next summer anyway.

He is worried that her hips will start dislocating and she'll be in pain.  What do you even say to that?  Nobody wants their child to be in pain, right?  I mean that's basically telling me that if I don't choose to do this surgery I'm basically subjecting my poor child to pain that is unnecessary.

In the meantime, we see Dr. Kwasnica next week and we are going to discuss Botox with her.  I still really feel like if we can loosen those tendons (temporarily) and use that time frame we have when the Botox is effective to stretch and widen those hips, we can maybe at least buy her some time.  I know in the back of my mind that this surgery IS inevitable.

So, that's the story.

It's discouraging.

I'd really appreciate any stories of success from anybody whose child has had this surgery...I hope there are some.

The Orthopaedist, the second visit

if you're an expert, you're welcome to analyze
this X-ray and tell me what you think in
the comments below!!

We visited the Orthopaedist this week.  It wasn't really that exciting of a visit, I kind of knew what to expect before we got there.  But I feel that it's important that we go so Sadie's hips can be X-rayed and her (lack of) progress followed.

The first thing we did was go to X-rays.  I probably should have mentioned on the way there that I'm pregnant (although, to me it's obvious), but I didn't.  So, when the guy took us in there, it was only him and I couldn't be in there to hold Sadie still.  He called someone to come help, but she was taking a long time.  Luckily, Sadie was being a good girl, and he was able to position her legs straight and then run and push the button and she stayed there!  I was so proud of her.

We've only seen Dr. Segal once, last August.  He told us then that he recommended snipping her adductors (tendons inside the thighs) so increase mobility.  We told him we'd like to wait and see before we jump to drastic measures like surgery and he said that was fine.  However, we were supposed to go back and see him in October, but we didn't make it.

So, this week when we saw him he looked at her hips again and said the left one (which was the bad one) looks the same, while the right one has gotten worse.  And again he recommended snipping adductors.  However, at this time we are in the process of getting a stander, which means Sadie will start bearing weight on those hips on a regular basis, which is part of the problem, since she doesn't walk, those joints aren't developing like they normally would.  So, this should drive the head of that hip joint further into the socket and stabilize it more and more.  The problem is that that head is about 50% uncovered and if it gets any worse it could drive out of the socket and cause it to pop out, therefore making the problem worse instead of helping it.

I told Dr. Segal that we're not ready yet to consider surgery of snipping the adductors, but that we'd like to continue what we're doing with the stretching and the physical therapy and add standing into the routine.  He agreed that we could wait.  He told me that it's not his job to tell me what to do, but to advise me, and if he thought I was making a bad decision, he'd tell me.  And he doesn't think this is a bad decision.  He also told me that he agrees to try everything possible BEFORE surgery because then I'll know that I did everything I could to avoid it.  But he made it sound like it's inevitable and I'm just delaying what's going to eventually have to happen.

So the other thing is that Dr. Segal told me that snipping the adductors doesn't guarantee fixing the problem.  In fact, when I asked him if this problem can be reversed at all, or if we can just working to maintain at this point, he told me that he's never seen it get better, just slow down the getting worse.  So, I know that big hip surgery is in our future...just how long can we hold it off?  Neither Tami nor Denise (physical therapists) feel like anything needs drastic measures now.  And I think we're (Tami, Denise, and us) all in agreement that as long as Sadie's mobility isn't impaired, and as long as she's not in pain, we don't need surgery.

Has your child had his/her adductors snipped?  Did it help?  Were you glad you did it?  Was it a big decision for you or was it a no-brainer?

The Orthopaedist

Today we saw an orthopaedist. We were told that we had to see one in order for the state to address any issues that come up with Sadie's CP. And it's good. We need to see someone probably on a regular basis. We did see someone a year ago and he x-rayed Sadie's hips. At that time we were going to keep an eye on the left one because it was slightly sublaxated. We expected more X-rays today, but we also expected to see that Sadie's hip had gotten better. We were wrong...it's gotten worse.

So, what this means is that her hips is slowly coming out of its socket. When babies are born, their hips aren't totally formed yet. Their joints rely on movement and pressure to fully put that ball in its socket. Part of this is sitting, part is being able to put their feet in their mouth, and part is being able to spread their legs...this is what Sadie can't do. She used to be so tight it hurt to wrap her legs around me when I held her on my lap. But, she can do that now, and she's much looser in her hips, which is why we thought it'd be better. What is happening is that since she's not reinforcing that ball to stay in its socket by spreading her knees apart, the socket is becoming shallow and eventually the ball will dislocate.

The doctor wants to be really aggressive about this and went straight to surgery where he would cut her adductor tendons to release those hips and give her more mobility through her legs. But he also said it wasn't guaranteed to fix the problem. And he said he'd be okay with waiting 6 months and looking at it again.

We asked a lot of questions. We don't want to inhibit even the SMALLEST chance of her ever walking, or even crawling. He told us based on his assessment of her basic reflexes, she has a VERY slim chance of being "independently mobile." I looked him straight in the face and told him we were told the same thing about her breathing and sustaining life. He understood and said he was in the business of providing hope, but he also wants us to set realistic goals for her.

We asked if there is any way this would correct itself. He told us that we needed to start stretching those adductors and working on getting her legs apart. He said she is tight, but it's weird that her hips and legs are loose. Thank you Michelle and your Movement Lessons for that! We will see her again in October and hopefully she can work on those adductors. We will also start stretching them at home and in her other therapies. I have a feeling that if she could comfortably spread her legs apart, she might be able to sit better...or at all.

So, we came to the conclusion that we'll see him again in 6 mos. We're going to work on those adductors in these next 6 mos and do everything we can to avoid surgery, but she's growing, and as her bones get longer, if her muscles can't keep up, who knows where we'll be. Surgery may eventually be inevitable. But the doctor did promise that he would not recommend any surgery that might prevent her from ever walking someday. I appreciated that because I refuse to lose hope on that.

But we also don't want that hip to dislocate because that could be really painful. So, keep praying for Sadie. She has some unique challenges because of her inability to move and use her body like you and I do. And it seems like this is a pretty common CP side effect, and we're in good hands at PCH, so I'm not worried. I just don't ever want my baby to be in pain.

hips and Bones

We saw the hip doctor on Wednesday...I know, I know, it's Saturday and I'm just now getting to telling you about this!! You see, there's this show on TV called Bones, and since we don't have TV, I get sucked into shows with multiple seasons on netflix instant streaming. I've watched 4 seasons of Bones and I can't stop. Usually I am okay with just moving on to another show even though there are more seasons I can't get right now, but this one is different somehow. There's an underlying love story between 2 friends who are partners in fighting crime, there is the beautiful slutty girl who experiments with bisexuality and whom everyone seems to fall in love with despite the fact that she's pretty slutty, and then there's the fact that the show is filled with nerdy scientists who solve murders!! Yeah, pretty great huh? It's like Law and Order meets Big Bang Theory...or something. Anyway, I found pirated episodes online and I am plowing through them with reckless abandonment, I'm addicted. ANd because that's ALL I do when I'm sitting here holding Sadie nurse-napping, I've neglected to write on my blog.

Please accept my apologies.

Okay, now that I've gotten that off my chest...we saw the hip doctor this week. In case you don't remember there were x-rays taken of Sadie's hip while we were staying at the hospital for Sadie's long-term EEG. There was some concern as kids with CP and high muscle tone (tightness in the muscles), tend to have problems with hip development due to straightening and pulling in of the legs. Sadie was also given a new medicine during this hospital visit to help relax her muscle tone and give her more control over herself. This new medicine has actually done wonders for Sadie and we really see a difference. But her left hip is somewhat of a concern.

We revisited the doctor who requested the x-rays and he mentioned that he'd like to inject Sadie's inner hip tendon with a medicine called phenol. (the link I gave you is wikipedia, the ENTIRE thing is about the chemical makeup of phenol, but at the bottom under "niche uses" it mentions the use for paralyzing nerves...scary) This would disrupt communication between that tendon and her nervous system and cause her leg to relax and hopefully allow that hip to move and develop correctly. This could last 4-6 months. (if you want to learn more about phenol, google "phenol used for cerebral palsy" and it'll give you more information)

I looked phenol up on the internet and found out that it's very common to use in people with CP, but it's pretty scary. It can cause side effects that an adult might be able to handle (like tingling and a cold sensation at the point of the injection), but to me sound like a recipe for a screaming baby. There is also the possibility that it could kill the tendon completely and we're not sure we're ready for that, she's still so young, and she might need that tendon for walking! We agreed to think about it and to see an orthopedic surgeon to see what he thinks. That's who we saw on Wednesday. His name is Dr. Karlen and he was very nice.

Dr. Karlen told me that, while Sadie's hip is somewhat of a concern, it's not something to get really worried about yet. We just need to keep an eye on it. Which means no drastic measures...like phenol. Yet. Dr. Karlen let me take pictures of the x-rays with my phone so I could share them with you, so I have attached them below so you can see for yourself. He says her sockets and bones themselves look good, we just want to make sure the ball of the socket digs real well into itself so that she doesn't experience popping out of joints or wearing out of cartilage. He would like to see her every 6 months or so and do more x-rays to keep an eye on it. He seemed fairly positive that we probably wouldn't need treatment for years.

This is great news.

And now I have 4 more episodes of Bones before I am done with season 5. Sick huh, maybe I need to see a "Bones" doctor myself.

You'll notice that the left hip (marked with a big red L) is slightly higher and sits a little less imbedded into the socket. Compare with the right hip, which looks okay.
This x-ray was taken with her legs froggied outward, you can see how the right hip is at a good angle for the ball to form its socket. However, the left is lacking in range of motion and is at a slightly different angle. We're working on that.


PS. I raised $375 in my first day of fundraising!! ...but I haven't raised any since. I'm still looking for donations and no amount is too small. Please consider giving to the Phoenix Children's Hospital, the very place Sadie's life was saved. Click the link below to read more about it.