Facing Surgery

If you’re a newer follower, or unfamiliar with Maura’s journey with Hip Dysplasia, here are a few links to fill you in.

This catches you up to last year, when progress stopped and all appointments started to blur together with the same news.

As you know, we met with a new orthopedic surgeon, Dr. Cook, on Monday at the University of Rochester Medical Center. I am happy to report that the new doctor is terrific, and he is now ‘our’ ortho. I have canceled all future appointments with our previous doctor and I’m never looking back. As I said last time, I left several appointments in tears and confused about what was going on with Maura’s hips, despite asking numerous questions. I can say that I left our meeting with Dr Cook sad, but informed and hopeful for Maura’s future. Although there are still unknowns, as there always seems to be with this diagnosis, I know what the plan is going forward – which makes me feel so much more comfortable than I’ve felt in the past year, despite the fact that we are most likely facing a rather large surgery within the next year.

The goal of Maura’s first procedure (the closed reduction), was to fit her femur head tightly into her hip socket and wait for her socket to grow around the femur head. A child’s socket grows in reaction to contact with the femur head. If the femur head is lose, as Maura’s once was, the socket doesn’t know where to grow and therefore doesn’t curve down around the femur allowing it eventually to dislocate. Maura’s had been dislocated for a while before we received a diagnosis. Once her hip was in the socket, the purpose of the cast is to hold the bones in place while they grew. Her hip socket formed enough to hold her femur in place with full range of motion. In 90% of children, getting the femur in the socket it all it takes for the body to do the rest. Unfortunately, Maura is one of the 10% … we don’t know why, but Maura’s hip stopped curving around the femur. Instead of a tea cup shape, we’ve got a saucer. Based on the lack of progress this past year, Dr Cook sees very little chance that it will suddenly change course for us to avoid surgery – although we are going to wait until May for one last xray just in case.

The procedure he wants to do is called a Dega Osteotomy. An osteotomy is essentially a re-shaping of bone. I think this website explains the procedure the clearest.

The good news, is Dr Cook does not like to use Spica casts unless absolutely necessary. He doesn’t think she would require a cast afterwards! This eases my mind tremendously, although I know either a brace or abduction pillow/wheelchair would still be needed. I have been worrying about how I would manage to lug around an almost 3 year old in a body cast when a 9 month old was hard enough!

Dr. Cook prefers doing the osteotomy between the age of 2 and 3. Bones grow rapidly in babies and slow as we age. At age 4, the growth potential declines. Getting the surgery done before age 3 lets us use the bones growth potential to heal faster and grow on its own with the help of the surgical changes. The more growing on it’s own that the hip does, the more natural the socket ends up – and the less chance of problems down the road.

I’ve had a couple people ask if the surgery is really necessary. Yes, it is. Maura is not currently in pain. But as her hip sits, it’s not able to take the repeated stress that a healthy hip can. She would most likely begin to experience hip pain and arthritis in her later teens or 20s and need a hip replacement shortly after, and again later in life. Without this surgery, we’d be denying her the choice to become an athlete, we’d be taking away quality of life at a time she should be having fun with her friends, dating, traveling, job searching, etc. If her hip doesn’t correct itself in the next year, it is not going to correct itself. It’s hard to think about putting a toddler through extensive surgery, but it’s harder to think that by not doing this for her, her quality of life would be severely effected. As obesity and many health issues are on the rise, my goal is to raise Maura with the highest chance of living a long and healthy life. Unfortunately, this surgery is part of what we need to do to keep her healthy and happy long term.

 

Looking back at this smiling face through our journey, makes the future look a little brighter.

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Switching (Hip) Doctors

I haven’t done a hip dysplasia update since August. Partially because we haven’t had much to update on, and in part because I haven’t wanted to think about it. Back in June we had the go ahead to take Maura’s abduction brace off during the day. At that time our surgeon didn’t think it was working well enough to justify keeping on. This news was discouraging, and confusing. I left the appointment upset with lots of unanswered questions. We had a follow up 3 months later (in September), and received similar news – her hips just aren’t improving. I had a series of questions prepared this time around, and Greg with me to make sure I got the clear answers that I needed to feel confident in our treatment plan. Unfortunately, I was unable to get my questions answered again.

After much consideration, I decided to change doctors. Our original surgeon from Oregon was great. (And just rated One of Portland’s TOP doctors by his peers) He spent a significant amount of time answering questions, explaining treatment options, and pointing out research that supported his plans. Even upon receiving bad news, I left appointments with him feeling sad, but hopeful. I have actually contacted him in a panic after our last two appointments in Syracuse, and relied on him to calm my nerves. This last appointment, I ended up sending all of our x-rays back to Oregon for review. Although he also feels surgery is a possibility, he emphasized that we have over a year for her hips to correct themselves and that there is no reason to talk future surgery until the future. What really caught me off guard was his interpretation of the x-rays. He saw “definite” improvement in Maura’s hip. He felt that the improvement was indeed slow, but that was all the reason to wait it out. He also felt that xrays were unnecessary for another year, as even if her hip indeed stops improving, there is absolutely no reason to intervene surgically until the very minimum of age 3.

Switching doctors sounds like an easy decision, but it wasn’t. I had originally heard positive things about our Syracuse dr. (I’m purposely not naming him, don’t want to throw anyone under). He came highly regarded based on his surgical expertise. He also has some (loose) family ties, and not everyone in my family was supportive of a switch. My decision came down to this: I just don’t trust that he has Maura’s best interest at heart. Whether this is true, or just due to differences in communication style – I don’t know. But, if I don’t trust him, how would I cope with him performing surgery on my child? If something went wrong, even a fluke accident, I would never forgive myself for not listening to my mom-intuition.

I went ahead and made an appointment with a doctor a the University of Rochester for next week (February 5). I’ve heard wonderful things about him through other “hip” moms, and am hopeful he is a better fit for the remainder of our journey – whether that involves more surgery or not.

Brace Free (for all the wrong reasons)

This post is months overdue – which seems to be my blogging trend. Honestly, after our appointment I didn’t feel like talking about Hip Dysplasia at all, I’m mentally done with this. Unfortunately, Maura’s hips are not done.

Back in June, we had our follow up appointment. We had been in the brace for 20 weeks, 12 full time, and 8 more 18-20 hours a day. I went in to that appointment knowing that slow progress, or even no progress was a possibility. Sure enough, the Dr. confirmed my fears that her hips hadn’t progressed. What really dug into my heart though was that because of the lack of progress he thinks it’s “more likely than not” to need further surgery around age 2.5/3.

Then we got the news we had been hoping to hear – she can take the brace off during the day. This news was bitter sweet. Every time I see those sweet little legs, I don’t get to feel joy that she’s improving. I feel disappointment. I feel fear. I feel sadness.

We have a follow up again in September. We are hoping that walking deepens her hip socket on it’s own, but I don’t know how likely that is.

  • Above, is our series of X-Rays. Beginning with the top left image (pre treatment), her right hip (shown on the left side of the image) is dislocated. The ball of the femur is under developed and therefore seen smaller on the xray.
  • In the bottom left image (post reduction and 12 weeks cast) the hip hip is in the socket and the bone above is begging to grow downwards as we want it to. Essentially, because her other hip is healthy – we want the two to look alike.
  • The middle image is 12 weeks of full time bracing. You can see that the bone above the femur is slowly coming down, but isn’t symmetrical yet – at this point our Dr. felt 10% chance of surgery.
  • In the image on the right, our Dr. said he doesn’t see any progress. This is the image that shot our chance of surgery up. I struggle with this image. I keep looking back at it, and am convinced I see growth. I’m hoping that I’m right, and that at our next appointment it will be more obvious. Trying to stay hopeful.

I’ll leave off with some pictures of my brace free child doing brace free things. She is normal, and we’re going to let her be normal until we can’t. She will continue to do normal kid things, and we will keep pushing hip dysplasia into the backs of our minds until we either can’t, or we don’t have to.

 

Pre-appointment jitters

Maura’s next hip follow up is tomorrow (June 6, 2017). She has now been in the rhino brace just under 20 weeks (12 weeks full time, and 8 weeks 18-20 hrs a day). I was excited for our last hip appointment because I thought I knew what to expect. Our previous doctor had been very set on 12 weeks full time, 12 weeks half time as the standard protocol for treatment after the cast. Our new doctor holds different opinions on treatment. I was devastated 8 weeks ago when I expected to hear  that we were free during the days to wear cute clothes, show off our little legs, and do what every other kid does for the warmer spring months – instead I heard “She’s doing great, you can start taking the brace off for 4 hours a day!” I must have given the doctor a look of death because he immediately said “or 6, more won’t hurt…. and longer for special occasions”

I knew this was a possibility. Our doctor back in Oregon told us that many doctors hold different opinions on treatment protocols when it comes to bracing and that there isn’t any research to support the differences. And, I have searched through every research database I have access to – and he’s right – I can’t seem to find anything. :Sigh: It’s not that I wasn’t happy to have more free time, but I felt like the light at the end of the tunnel went out. Without a specific timeline, how do we know for sure when this journey will end? I guess we don’t. So here I am, trying to prepare for our next appointment. Will we get the news we want to hear? or will this journey drag on and on.

Appointment prep questions:

  1. Is her progress still in line with your expectations?
  2. How are we measuring progress? What is our end goal? (I asked this question last time and was disappointed in the response I got of “I’ve seen lots of hips and we’re just looking for more improvement” You know what I didn’t find in my research? an article that recommended “eye ball the xray and go with your gut” grrr, better ask this question again!
  3. Is the chance of future surgery still approximately 10%?
  4. Are there any activity restrictions or recommendations?

I’m sure I’ll think of more by tomorrow, but for now that sums up what I need to know. Wish us luck!

 

 

Life in the Rhino brace

We have been almost full time in the Rhino brace for about 3.5 months now, longer than we expected with quite a bit of time to go. I wanted to wait to share our experiences until we really had a grip on living with the brace, and I can definitely say it has become no big deal. I don’t like it, I can even say I hate it, but what I really hate is not being able to wear cute clothes with summer quickly approaching.

The first weeks were a bit rough. Maura was very weak after her 3 months in the spica.

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Few hours post-spica removal.

She couldn’t sit up on her own and her legs seemed to flop in every which way. One of her very first tantrums (and really one of her only ever) was when she tried to sit up and couldn’t. In the cast it was like she knew the cast was keeping her from sitting up, but when it was gone and she still couldn’t, she was really upset and frustrated – to the point of hitting her head on the floor and pulling her hair – poor kid. I ended up bathing with her in the tub for about 2 weeks, it took that long for her to get sturdy enough to sit alone. We also couldn’t fit the brace in her car seat as we were told we would be able to. The ortho did give us permission to take it off for car rides, which is great – but not fun in reality. I was taking the brace off, putting her in the seat, getting where we were going, putting it back on often in a parking lot, doing our errand and then repeating to go home, or repeating several times to do multiple store errands! We didn’t get out much during the first few weeks…

We had a follow up appointment and X Rays 2 weeks after the cast came off. Maura’s hip was looking great, very stable in full range of motion even under light pressure. Her acetabular index had gone from 48 degrees to 35 (we wanted under 30 at 6 months, and closer to 20 by age 2). Her ortho declared “Perfect Progress” and expected further improvement with the brace. Woohoo! We also brought up our concerns with the sizing of the Rhino – to which he agreed to let her try on a larger size. The nurse assumed it would be way to large, but to her surprise it fit very well. In the larger size brace Maura was able to move around a lot better, mostly due to the ability to now bend at the waist. Think – jeans that fit compared to a waist band two sizes to tight! The new size also allowed her to fit in her carseat!!! That made life a lot easier.

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A week or two post spica 

Once the sizing was right, Maura started right in trying to find her legs and get moving again. She was able to army crawl, as she did in the cast, immediately. The second day in the brace, she even pushed herself into downward-dog briefly while dancing to Sesame Street! Over the course of weeks, her knees started getting more underneath her and her crawl became more normal opposed to the army crawl dragging her legs. Though her legs don’t move individually, she seems to tilt her pelvis back and forth allowing her legs to take turns and move her forward. It took about 2 months to sit up straight, legs in front of her while in the br

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2ish months post spica

ace. I’m not sure why it took her so long, but maybe a combination of weak core and needing even more strength to counteract the pressure of the brace pulling her back. I really don’t know, but once she mastered
that her milestones really started to take off. Almost at the same time, she started not just pulling herself to stand (she actually did that within 2 weeks of cast off), but pushing on things that would move like the rocking chair or boxes. Now at 13 months old, and out of the cast for 3.5 months – she is standing unassisted for a few seconds at a time and even took a few independent steps tonight!

I think the brace is easy, but only because the spica was rough. If we hadn’t done our time in the cast, I don’t think I’d have the same opinion. But, here are some tips and tricks to make things work…

Verify that it fits properly! Ask to try on different sizes if you can. This made the world of difference for us.

  • We still use our Spica table for meals. We tried using the booster seat we used during the spica days, but found that Maura’s core strength wasn’t enough to sit up in it without the cast. Now, she can use the booster but there was a good 2.5 months that there was no way.
  • The Velcro will wear out, way sooner than you expect it to. I bought a large role of Velcro from JoAnn’s and reinforce the straps every few weeks with fresh sticky Velcro. I attach it with thin strips of colored duct take.
  • You can also extend the straps using the new Velcro or with felt. If there is any rough side of the Velcro exposed it will scratch your forearm and leave scars. It’ll also ruin any clothes (on you or them) that is woven.
  • You can use a fine comb to comb out the fluff that will immediately collect on the brace. I usually comb it well, then use duct tape to pull the remaining fuzz out. It’ll never come completely clean though – keep your expectations low.
  • Put towels or blankets under the brace if you’re going to let your kiddo sit on anything that could scratch, I keep a dish towel in my diaper bag.

 

 

Hip Hip Hooray – It (was) Cast off Day!

Cast off day was actually January 24th… I’m apparently a month (plus some) late getting to posting this. 

Ready to get this thing off!

We were warned that getting the cast off would be pretty traumatic, and it was, but we recovered quickly. We were also warned that Maura may be in pain from stiffness or sensitive skin- but she wasn’t at all. Here’s a run fown if the appointment:

The appointment was at the clinic and scheduled as a follow up. We got there and a nurse came in to remove the cast. We came with distractions and sound canceling headphones but neither helped. We were instructed to hold her on her side, not ideal for her to play with my phone and she could see what was happening. She stayed calm until the saw touched her cast, it vibrates so even with the noise muffled- she freaked. She ripped the headphones off immediately (waste of only 15$ thankfully). The next 15 or so minutes consisted of holding down a flailing and thrashing baby with all our strength. The nurse said she’s the strongest baby she’s ever seen! The fiberglass was double thick, and each cut had to be made twice- it felt like forever and I’ve never seen Maura so upset. It pulled at my heart, but part of me felt joy at the same time. I couldn’t wait for this day! 

Once the cast was off I was scared to touch her. The nurse had to tell me it was ok to go ahead and pick her up. She felt so tiny, but LONG, and extremly floppy. Happy to report her little leg rolls were still there! To hold her was like holding a giant newborn. Her core was just very out of practice. 

Sweet freedom!

Her skin was red around her thighs and casted knee, very flakey – like a peeling sunburn- but she didn’t act sensitive. I had given her a dose of Tylanol in the waiting room, but she didn’t seem to achey either. What I wasn’t expecting was the fiberglass from the cast got all over the table- which really roughed up Maura’s skin as she thrashed in it. She had a very bad rash on her shoulders, upper back, and arms. When I bathed her at home, I let water run over it without rubbing it. I was nervous that glass particles could still be on her. (I don’t think there were, or the running water took care of it). I then blotted prescription hydrocortisone cream on it and it cleared in a couple days. I’d recommend keeping a long sleeve on, but pulled up to protect if you have a wiggly kiddo. 

The nurse had a washcloth and sink available to wash her while we waited for our ortho to come in, but I couldn’t set her down. She was emotional and I couldn’t get enough of her body snuggled against me. 

The ortho came in and did a physical exam. Moved her legs around gently. Her hip felt very stable! Since we were getting ready to move cross-country, he ordered xrays and a follow up in 2 weeks. He doesn’t do them that day since they’re typically very stiff. He usually waits 12 weeks to check progress, but wanted hard evidence of where we stood to pass to our new doctor. He said she looked in fantastic shape and that the nurse would come back in to fit her rhino brace- to be worn always except diaper changes and baths. (And due to my concern about a carseat, he said as long as her legs have wiggle room we could take it off for the car). 

The nurse returned and helped us dress her. I brought several outfits just in case She was too stiff for pants, but super stretchy leggings worked great. (Izzie & Owie brand are awesome!)

We got our carseat installed by the hospital’s safety center right before our appointment (didn’t want to keep a hippo and have to ship it back west when we moved? Not sure theyd even have let us… so we bought a new Britax Marathon.) Unfortunately, the brace didn’t let her bend at all to fit…. so off it came already. *more on that soon… turned out to be the wrong size brace!

All in all, stressful but exciting day. Next up: 12 weeks full time in a rhinobrace followed by 12 weeks half time! Rumor has it it’s a breeze compared to the cast, and since I’m writing this a month late- I’ll agree! 

Cast Change Day

Cast Change Day – the half way mark for many hip babes is a big DDH miletone. I wan’t quite sure what to expect, so if you find yourself in the same boat: here is our experience.

The cast is changed very much like it was put on – in the operating room, under general anesthesia. We were called two days in advance to set times for our procedure. We again had the first procedure of the day – our hospital does it in order of age. We had a 6am check in time, and an hour and a half drive to the hospital meaning we had to leave the house around 4am (to be safe… you know 4 am traffic or an ocd mom…). Lucky for my husband, he was returning from a work trip at 1am – plenty of time to rest up 🙂

I woke Maura to get her last feed in at 3:30am, and we took off shortly after. We were taken back pretty quickly, and the routine was the same as the original Closed Reduction. The main difference for us, was that this time there would be no arthrogram (dye injected to see the joint alignment). They would cut the old cast off, check the stability of the hip, do an MRI, and put the new cast on. Easy peasy.

She was taken to the OR again without a fuss at 7am, and we were called back by 8:30 I’d say (I can’t remember exactly, but it was short). The first procedure, Maura woke up a bit ‘drunkish’ from her anesthesia, but not upset. That was very different this time. Maura woke up inconsolable. She cried for about 40 minutes straight and wasn’t soothed by anything. This caught me off guard… they told us it was a possibility the first time around, but because the first time went fine we didn’t expect it. The nurse explained that typically it takes 30-40 minutes to wake up out of anesthesia, but Maura seemed to force herself half way awake within 5 minutes. This was most likely due to not having any pain meds for the procedure, the pain meds slow the waking process. She was awake, but had no idea where she was and didn’t recognize me. This crushed me. Finally she started to calm down and because her old self around that 40 minute mark. She nursed, and then was fine, and even playing peek a boo and giggling as we went through the rest of the routine.

This time, I brought my duct tape and moleskin with me. As soon as we were able, I broke out my own diapers and got her set to a degree that I felt comfortable driving the house and a half home! Unfortunately, I found a lump in her cast that I wanted taken care of before we left. We had to wait for the surgeon to finish his second procedure of the day before coming back which ended up to be about another hour or hour and a half. The OTs came to re-fit the car seat, which took about 20 minutes instead of the 90 that it took last time. I spent the rest of our waiting time putting duct tape and moleskin on the cast – the parts I was satisfied with. Maura was back to her self, so she read ‘Where is Baby’s Bellybutton?’ in her hospital crib for a while, waved to the staff as they walked by, and played some peekaboo with her blankey. While I did that, my husband took the car seat down and had it reinstalled with the Safety Center. (Our hospital has a Safety Center, they loan out car seats and help install them, they also sell baby proofing gear for a low price.)

The surgeon finally came back out, and sawed off the end of her cast to remove the lump and give her foot full range of motion since I had explained how mobile she had become in her first cast. From check in to check out we were there 4 hours, which it could have been much shorter. All in all, it went ok. I’m glad to have made it across the hump! And, since I’m writing this weeks later… we adjusted very easily to cast #2, and are even more mobile in this one – crawling, rolling both ways, pulling up to stand!

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New clean cast! I got fancier with pink polka dot duct tape this time 🙂