If I keep waiting for good news to post, it looks like I might not be posting again for awhile.
To cut to the chase - the surgery did not improved anything that was messed up prior to the surgery. Still no supination. Still lots of elbow pain. Still bone rubbing on bone at the elbow joint. The only improvement is the scar, which actually looks really good. Not much gain for the trouble of going through surgery, though.
So, we tried what seemed like the right plan of action, but it didn't work. Again. If you think Mason might be "angry" about this, you would be underestimating how he feels.
Our surgeon is currently presenting Mason's case to a larger audience, in hopes of finding someone somewhere that will have an idea that will be useful. I was given the name of an orthopedic doctor in the Philadelphia area who is highly thought of, and am pondering if we should make a trip "back east" to have a consult. But first I'd like to see the response we get through official channels. Its hard to know which way to turn in a situation like this, and I am really hoping our surgeon will be able to get in touch with the right person. While I believe Mason is the only person in the KC area with this kind of anomaly, I have a hard time believing he's the only guy in the whole country with it!!
As soon as Mason's schedule opens up a little (pep band is keeping him super busy this season!) we are going to hire a personal trainer to help him work on the muscles in his arm around his elbow in hopes of gaining a little something there. This was suggested by the occupational therapist, who released him at the beginning of the month, and seems like a good idea. He has been released from lifting restriction, so we will see how that goes.
Hopefully we will find something out in the next month or so. I will update when we do.
Wednesday, February 29, 2012
Thursday, January 19, 2012
january is a long month
Mason visited the ortho doc again yesterday. The new bone growth looks great, and she has removed his lifting restrictions--he is now free to carry furniture around for me again! Woohoo! Now THAT is some good news!
He is still plodding away at the physical therapy part. As a matter of fact, he is now "functional" in the arm-straightening club, meaning he hit 24 degrees, down from a beginning 76 degrees. Less than 30 is considered "functional", I think by the insurance industry standards, and isn't that what rules the world? We are still aiming for zero, but he is definitely moving in the right direction! He resumed piano lessons and discovered that his thumb didn't work! He could bend it at the last joint, but not straighten it. After the doc examined it yesterday she discovered it does work, it is just very weak. In fact so weak it couldn't overcome gravity--he could straighten it if he held his hand upside down, because gravity wasn't working against it. Pretty crazy, but something that can be fixed! Eureka!
We continue to be frustrated with supination, or lack of supination I should say. Also, he is still feeling quite a lot of pain in that blasted elbow. :( Our hope is that since we are just shy of 2 months post-surgery, there is still healing to come in that area. Please keep your fingers crossed for that, because the pain is the number one problem here.
He is still plodding away at the physical therapy part. As a matter of fact, he is now "functional" in the arm-straightening club, meaning he hit 24 degrees, down from a beginning 76 degrees. Less than 30 is considered "functional", I think by the insurance industry standards, and isn't that what rules the world? We are still aiming for zero, but he is definitely moving in the right direction! He resumed piano lessons and discovered that his thumb didn't work! He could bend it at the last joint, but not straighten it. After the doc examined it yesterday she discovered it does work, it is just very weak. In fact so weak it couldn't overcome gravity--he could straighten it if he held his hand upside down, because gravity wasn't working against it. Pretty crazy, but something that can be fixed! Eureka!
We continue to be frustrated with supination, or lack of supination I should say. Also, he is still feeling quite a lot of pain in that blasted elbow. :( Our hope is that since we are just shy of 2 months post-surgery, there is still healing to come in that area. Please keep your fingers crossed for that, because the pain is the number one problem here.
Tuesday, January 3, 2012
another new year
I really didn't envision this blog would still be in use in 2012.
Mason continues to go to occupational therapy twice a week. The "angle of straightness" (highly technical term there) for his arm has gone from 76 degrees to 38 degrees in the month or so since he started, with "normal" being around 0 degrees, and "functional" (by whose standards?) less than 30 degrees. So he is definitely headed in the right direction for that particular issue.
The supination is another issue that hasn't really been delved into yet, but improving it was one of the goals of this surgery. So far his supination ability is zilch. Not sure what the "normal" numbers would be, or even what his number is now, but he cannot turn his palm up. Yet.
His next visit with the surgeon is January 18.
Mason continues to go to occupational therapy twice a week. The "angle of straightness" (highly technical term there) for his arm has gone from 76 degrees to 38 degrees in the month or so since he started, with "normal" being around 0 degrees, and "functional" (by whose standards?) less than 30 degrees. So he is definitely headed in the right direction for that particular issue.
The supination is another issue that hasn't really been delved into yet, but improving it was one of the goals of this surgery. So far his supination ability is zilch. Not sure what the "normal" numbers would be, or even what his number is now, but he cannot turn his palm up. Yet.
His next visit with the surgeon is January 18.
Wednesday, December 21, 2011
baby steps
Mason's visit today with the orthopedic dr was good. He is making bone, and there are no signs of infection in the area where it was last time. This is super good news, because there is a giant metal plate in there, pretty close to the same position as the one we had to take out after the last infection.
You can see in this x-ray just how far his ulna was pulled apart to realign things: (click on it to enlarge)
You can see in this x-ray just how far his ulna was pulled apart to realign things: (click on it to enlarge)
I can better understand how fragile the union really is now! Thank goodness for that big honkin' plate! It's nearly 6" long, and is holding that bone together nice and straight.
Mason has been released to some light drumming - nothing crazy. He is allowed to lift things up to as heavy as a large package of toilet paper, and has a new RX for physical therapy that will include resistance bands. His dr nearly fell over when he asked her if he could play lacrosse this spring. :)
So things are headed in the right direction. Time for more physical therapy!
Friday, December 16, 2011
these are the times....
I may have mentioned this previously, but.....physical therapy SUCKS.
That's a word I hate, and ask my children not to use, but I have to admit it applies pretty well here. It really does suck the cheerfulness and the optimism right out of you. It's such hard, menial work for such small results.
Mason's been at it for a couple of weeks, and he has made progress. It is not the high profile stuff a teenager wants to see, but it is significant. One example: his ring finger and pinky finger wouldn't straighten right after surgery, now they do. But there is so much more that has to be addressed, stemming back to issues in play before this last surgery took place. It is going to be a long and long and long haul. sigh.
He goes back to see the ortho surgeon Wednesday 12/21. Will update after that visit.
That's a word I hate, and ask my children not to use, but I have to admit it applies pretty well here. It really does suck the cheerfulness and the optimism right out of you. It's such hard, menial work for such small results.
Mason's been at it for a couple of weeks, and he has made progress. It is not the high profile stuff a teenager wants to see, but it is significant. One example: his ring finger and pinky finger wouldn't straighten right after surgery, now they do. But there is so much more that has to be addressed, stemming back to issues in play before this last surgery took place. It is going to be a long and long and long haul. sigh.
He goes back to see the ortho surgeon Wednesday 12/21. Will update after that visit.
Monday, December 5, 2011
2 weeks after
First off, I have to say: O.M.G. to the long day we spent at the doctor's today!! If anyone out there is trying to decide which field of medicine to practice, let me give you advice: pediatric ANYTHING!! There are way too many patients, and not enough physicians!! You seriously have to get into the hospital/doctor office "zen" before you head off to a double-header appointment like we did today.
The visit to the Infectious Disease folks was pretty uneventful.Well, I guess I could backtrack and say that first we had to go to orthopedic office to have the cast removed so the ID doctor could look at it. That took a little while, then there was some confusion on if it was ok to take the cast off, etc. But in the end the prognosis was good, and we DID NOT have to renew the prescription for the clindamycin! Now *that* is some happy news in itself! So two more days of the brain fogger, and then Mason will be medicine free (except for pain killer as needed--more on that later). Of course they had to sneak in a flu shot before we got out of there. Mason was supposed to get one before surgery, then they decided it would be better to wait until after. So now he has a sore right arm too. :)
After that visit we had a break for lunch - Town Topic burgers were on the agenda. Mason at a triple, then a double. So his appetite is back, obviously.
The orthopedic appointment after lunch was the grueling one....because of the long wait. ugh ugh ugh. But, I guess it was worth it, because the doc said everything looks "good". Keeping in mind that good is relative, see below:
There were no x-rays today - I was kind of surprised, but frankly could not have handled one more thing at that hospital anyway. His next orthopedic appointment is December 21, and I'm sure by that time they'll x-ray to make sure that bone graft is taking hold. Mason's hip is still pretty uncomfortable when he goes up and down stairs or is on his feet very long. I could have sworn I heard them say it would hurt "for a few days", but today the doc said it often takes a month or so to heal up and start feeling better. I must have been thinking of the needle extraction of bone marrow rather than the chiseling of a hunk of bone.....or maybe thinking about how much I like vanilla. Oh well....it is the "gold standard" for bone grafts - nothing but the best for the G man!
The visit to the Infectious Disease folks was pretty uneventful.Well, I guess I could backtrack and say that first we had to go to orthopedic office to have the cast removed so the ID doctor could look at it. That took a little while, then there was some confusion on if it was ok to take the cast off, etc. But in the end the prognosis was good, and we DID NOT have to renew the prescription for the clindamycin! Now *that* is some happy news in itself! So two more days of the brain fogger, and then Mason will be medicine free (except for pain killer as needed--more on that later). Of course they had to sneak in a flu shot before we got out of there. Mason was supposed to get one before surgery, then they decided it would be better to wait until after. So now he has a sore right arm too. :)
After that visit we had a break for lunch - Town Topic burgers were on the agenda. Mason at a triple, then a double. So his appetite is back, obviously.
The orthopedic appointment after lunch was the grueling one....because of the long wait. ugh ugh ugh. But, I guess it was worth it, because the doc said everything looks "good". Keeping in mind that good is relative, see below:
To me it looks kinda like someone held a hot poker on him in a few spots....the skin has died a few places due to the extreme stretching it had to do - about an inch. If the skin looks like that (the doc assured us it will slough off and heal just fine) you can only imagine what the tendons and muscles inside his arm are feeling like!! Yikes! He still has quite a lot of swelling in that elbow area, and it is pretty bruised and tender. His incision, however, is quite "normal" looking - not much swelling, not tender, not red. Yay for that! The surgeon excised the old incision with all the scarring (due to the infection), so the new incision will end up looking nicer, too.
So they took the cast and modified it to be a half cast, like a shell for his bent arm to rest in, held on by ace bandage. This is temporary until his OT makes him a splint to wear. That's right - he already got a prescription to start occupational therapy. Gasp! No rest for the weary! I will call tomorrow and get things set up. There will be no weight bearing exercise for awhile, mainly just stretching type stuff. His muscles are really tight after being pulled apart about an inch, but the doc is optimistic that he is going to get more motion than he had before. We may have to use some of those pain pills after the therapy starts. But of course the best part of losing the cast is...showers!! No more press-n-seal, no more washing hair in the sink!
 |
| Half cast - before they put new cushion in it. |
There were no x-rays today - I was kind of surprised, but frankly could not have handled one more thing at that hospital anyway. His next orthopedic appointment is December 21, and I'm sure by that time they'll x-ray to make sure that bone graft is taking hold. Mason's hip is still pretty uncomfortable when he goes up and down stairs or is on his feet very long. I could have sworn I heard them say it would hurt "for a few days", but today the doc said it often takes a month or so to heal up and start feeling better. I must have been thinking of the needle extraction of bone marrow rather than the chiseling of a hunk of bone.....or maybe thinking about how much I like vanilla. Oh well....it is the "gold standard" for bone grafts - nothing but the best for the G man!
Monday, November 28, 2011
so far, so good
Mason had an impromptu visit with the doctor this afternoon, and there is no sign of infection so far. Yay! It is not uncommon to run a little fever in the days following surgery...but it is something to keep an eye on, especially with his history.
His incision looked pretty good, but he had a really big blood blister looking spot where the soft tissue was stretched/damaged during the procedure. The doc said it will heal fine with no scarring, but it was pretty weird looking. You can see it under the yellow gauze - the incision is at the bottom of his arm, and stretches nearly the length of his forearm. Overall there is still quite a bit of swelling and bruising, but nothing unexpected. The doctor probed his arm, and there was no pain around the incision, just around the elbow where the soft tissue is angry.
The doctor put a full arm cast on it (which makes me happy because it is more protected for going back to school) and he will go back next Monday, Dec 5, after the Infectious Disease clinic visit. Hopefully we will have an uneventful week with no fevers, no new pain.
His incision looked pretty good, but he had a really big blood blister looking spot where the soft tissue was stretched/damaged during the procedure. The doc said it will heal fine with no scarring, but it was pretty weird looking. You can see it under the yellow gauze - the incision is at the bottom of his arm, and stretches nearly the length of his forearm. Overall there is still quite a bit of swelling and bruising, but nothing unexpected. The doctor probed his arm, and there was no pain around the incision, just around the elbow where the soft tissue is angry.
The doctor put a full arm cast on it (which makes me happy because it is more protected for going back to school) and he will go back next Monday, Dec 5, after the Infectious Disease clinic visit. Hopefully we will have an uneventful week with no fevers, no new pain.
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