My Hippy Dudes

Nathan and Braden had their appointments with Dr Tompkins at Shriner's Hospital yesterday. As in most comparable situations, we got some good news and some bad news. I'll start with the good news.

Things look great for Braden right now. His femoral ball is definitely in the collapsing mushroom shape, but the steroids from his surgery in September seem to be doing the trick to keep him pain-free and not limping for now. He's normally a perky and easy-going boy, so it will be easy for us to recognize any decline as his hip starts to eventually disintegrate--for lack of a better description. He has a fancy problem called Legg-Perthy's disease, which is the dying of the bone inside the hip socket in children. It happens in adults too and is typically called Osteonecrosis--since it's the dying of a fully mature bone, at that point. But kids are a little tricky because they are pre-wired to grow bones, not kill bones. And for some reason unbeknownst to any earthly being, Braden was born with a compromised blood supply to his left hip and was diagnosed with this anomaly at the sweet age of three. His gait and leg positioning was classified as "on the extreme side of normal" then, with the promise that we'd just see what happens as he gets older and taller. We feel pretty fortunate that we've only had to start "treating" the disease this year--six years after the original diagnosis.

When Dr Tompkins went into the hip back in September, he said that he would have to have the exact same surgery on Braden that Nathan had last January. (Talk about having that sinking feeling going through you!) And he said that the odds of this happening in the same family from completely different causes was 1 in a million. Wow. Lucky us! So somewhere between the age of 14-15 years old, he'll be split open from mid thigh to high waist, and have the femoral ball ground down and repositioned inside the socket. Or cut off, rounded and repositioned with plates and screws. It's a pretty grueling surgery (Nathan's was 7+hours), and will include several months of recovering and physical therapy for sure. Oh, the things we look forward to.

As a parent--I just want both boys to be normal, healthy kids when all the work is done. Normal--as in walk, put their own socks on, and go to their room (downstairs) when I tell them to!

These surgeries are so sophisticated and impressive in the results...for which I'm extremely grateful to live in a day and age that we have such miraculous abilities to heal and correct problems...but at the same time, I have a little bit of that "Why us?" attitude to work through. My boys were built for and bound for boy stuff--like typical roughhousing, football, soccer, karate, and trampolines. But now those activities are forever shelved and we need to foster a love of some solo sports--like swimming, cycling, and low (and if possible NO-impact) aerobic exercise. That's a little tough since my chatty boys would rather be involved in team sports rather than the lonely ones. So we have some more things to brace ourselves over and to work on in the upcoming years.

Now for Nathan. He's a little upset right now and I don't even know what to tell him to help him through the next few weeks. The x-rays didn't look too good. He's been complaining of aggravating pain in the upper socket. I put him off a bit about getting him in sooner because of the holidays and because we had an appointment scheduled already. But so glad we didn't wait any longer. Dr Tompkins said that it looks like his hip has collapsed a bit more and the screws are impinging in the hip socket. What does that mean? The bones have healed together but the screw tips has gone through the femoral ball and are scraping down his hip bone when he moves. In short--LOADS of pain and discomfort.

(picture from his check-up in August 2011)

We were told that Nathan's case was pretty serious and was the second worst case this team at Shriner's had even seen. Our odds for a great recovery were small and truth to tell--he has not had the best outcome hoped for. But in contrast, he had SO much pain relief from the newly ground down femoral ball, that the doctors were shocked that he was moving along in his recovery so well. He was determined to get back to school, get out of the wheelchair, off the walker, and in front of the crutches. He wanted to see his friends and get back into a "normal" routine, although he went through five months of physical therapy and several more months of swimming lessons this year.

In August, the x-rays showed that he had lost about an inch of bone length on his left side. He was limping...and because it was so exaggerated, we thought it was a learned behavior. Not so, come to find out. He got two new pair of shoes and under doctor's orders, we had 1" lifts added to them. [Let me just add--at $60 a shoe, not including the cost to actually purchase the shoe first, lifts are NOT for the vain, because you couldn't afford to alter more than one or two at a time. So he got his new school shoes and a pair of dress shoes for church done. So much for variety ;] But even with the lifts, the limping has been getting worse and worse. His body is trying to compensate for the immobility and poor muscle structure in his bum hip and so it throws the weight distribution to the opposite knee and leg, contorting his body line into an S-shape.

With the testing yesterday, it was determined that the hardware needs to come out to stop the screws from scraping the other bones. And the surgeon is hoping that while they are in the socket, they can get a better look at what's going on behind the femoral ball. After he heals a bit, he'll have to go back to the motion lab and reevaluate the degrees and angles that would work best for his mobility. Then we'll have to move to the next step from there. He refuses to use a cane, even though that would probably benefit him a lot right now. He refuses adamantly to even consider using it at school. Kids would never tease or taunt, right? Ugh! They have an elevator to get to the upper level, and come to find out--he's never used it. That will be changing when the kids go back to school... Mom will see to that!

Hip Fusion. That was the latest possibility brought up by Dr Tompkins for Nathan. He said that studies are showing that since teenage boys are "harder" on their hips then girls (what?--'ya think?), fusions seem to work better and last longer in males. Some are showing that they are lasting 10-20 years before hip replacements are needed. That sounds like a piece of cake compared to what we've been preparing ourselves for. We've already gotten used to the idea that Nathan will probably have his first hip replacement while he's still living at home (sometime between the ages of 15-20), but 40 sounds really good!

So Nathan is going in for another surgery almost a year to the date from his last ordeal. Obviously, he won't be in nearly as long as last time--and we're definitely praying for good results and pain-relief for him. It will be nice to actually have the doctor see with his own eyes what is going on inside that hip--rather than trying to guess what is not seen between bones. A cat scan was a possibility, but with work needing to be done anyway, a first-hand look is the best option right now. So on January 3, 2012, Nathan goes in for his 8th surgery.

He's bummed. But he is a true optimist. Just before the appointment, he was going through and listing off last four years in order and how he's had one or two surgeries in each year. He was hoping that 2012 would break the cycle. But it's not to be. So then he decided that it would be better to not hurt then worry about breaking the cycle. Very mature understanding for an 11 year-old, so I thought.

And so Nathan also informed us that he should benefit from this malady a little more, like with a trip to see Alvin and the Chipmunks, his last meal before the big Surgery day to be at the Olive Garden, and to have his best friends come over and hang out the day before. As parents, we aren't putting up too much resistance to his requests, because in all honesty--it sucks to be him right now and if movies, play dates, his favorite meal, or a few new toys distract him from the agonizing pain--they're his!

Legg-Perthy's Strikes Again...

Braden was diagnosed at 3 yrs-old with something called Legg-Perthys Disease. It's a condition in the hips where the blood supply is not reaching the bone and so the bone starts to die and collapse. It happens in older people as well--and it's called Osteo-necrosis; usually treated with a hip replacement and life goes on. But in children, they are still growing and trying to develop with this condition, compromising the growth we take for granted. They say the the younger a person is diagnosed, the better the results. And being that he was so young...we've really haven't given it much thought through the years, because he's been so active and undeterred. Until the third week of September. He came home from school complaining that his leg hurt. It's always the left leg...Ok. We pacified him with some video games and an early bedtime. But Saturday came, with endless complaints and some funky walking strides. By Sunday morning, he looked like he'd been pole-axed through his tail and his legs didn't go together straight. What to do, what to do.

I called Shriner's on Monday morning. They are not the easiest place to get into right away because appointments are made months out. But we had just received a card in the mail reminding us to call and schedule the 6-month follow-up that he needed since his April appointment. When I called, I mentioned the problems that we were having, and they got him in immediately with a PA. She ordered x-rays...and this is what she came back with.

(April 2011--the left side still has a circular ball-shape)

Braden had had a lot of pain since April, because his femoral ball is no longer round, but in more of a mushroom-shaped collapse. Pictures really do tell a broader story of what's going on, than just watching him walk around.


(September 19, 2011)

There isn't a lot they can do right now...since he's only 9 yrs-old. But they said he needed to have steroids put in immediately for pain-relief. So between Jeff's crazy graveyard work schedule and the other kids' activities...we got him in for surgery on September 29th. We had to be at Shriner's pre-op room by 6am for check-in and medical scrubs. We were lucky to be first in the day's operating room line-up.



The same surgeon that did Nathan's surgery back in January, Bryan Tompkins, did Braden's. He injected the femoral head with steroids and put some dye in the socket to see what was going on the the joint. He said that thankfully the head is matching the socket, despite the shape, and not impinging his movement too much, otherwise. His range of motion has decreased a lot compared to what's normal. He is 100% exempted from PE and contact activities--which is totally sad for him. (He loves a good brawl with the boys, if you know what I mean). They are hoping that the steroids give him enough reprieve to walk and keep up low-strain activities, at least for the time being. They warned us that he would need the exact same procedure as Nathan when he is about 14-15 yrs-old. AGG!! The doctor explained that it's really 1 in a million chances that two boys from the same family with totally different diagnoses would have to have the exact same surgery. But that is how they have to treat Legg-Perthys as well as the SCFE in Nate. Wow. Both boys will need hip replacements before they are 20...or sooner.



The two boys we thought were destined to be our football players have been forbidden from the field. They are in swimming right now...but need to work hard to increase their kicks and strokes because of bum hips. Core build-up and work-outs are going to be the goal this winter, to help the muscles around their hips increase in strength, so that they can swim better. They both love the water--so hopefully--we can have some strong swimmers instead of footballers!

What to expect? A gradual limp in his walk. A surgery to stunt the growth plates on the good side to allow the left side to catch up. Massive reconstructive surgery in his early teens. Constant monitoring. Treatments as needed. Hip replacements. No big deal. Just par for the course in our family. We seem to have the fiery challenges in life well-stoked. At least Nathan can be a morale booster for his brother. We'll have to compare the pain thresholds between them...and see who's the winner! But I already know that they are both winners for the amount of crap they've had to go through for their young ages.

I thank God every day for hospitals like Shriner's. I don't know what we would do with even 10% of the hospital bills that we've accrued so far and will continue to mount in the future. We were hoping that Braden would grow out of his childhood bane, but that doesn't seem to be the case. The doctors are amazing and the hope for a normal future is on the horizon!