Wednesday, December 29, 2010

getting there....

Today was another orthopedic check-in, and it was less eventful than last week, thankfully.  Mason's ulna has moved apart about 5 mm, which is about .2 inches.  We are hoping for around 17-20 mm, which is not quite an inch.  His next surgery to remove the external fixator and add a new plate directly on the ulna is tentatively scheduled for Friday, January 14.  It actually is set for the 7th, but since we missed a week we are probably looking at the next week, which is ok.


Today the doctor adjusted the external fixator at the elbow because it was getting a little too snug against Mason's arm.  That was done with metric allen wrenches, and was a little painful.  Basically anything is painful these days, and if you look at the x-ray you can see why!  But the doctor says he is putting on bone, and it is looking like it is supposed to.  The ends of the ulna look like they're being pulled apart side-to-side in addition to length (and they are) but I guess that's not a biggie - she will clamp them in place during the next surgery.


So, all in all things are looking good, in orthopedic terms, for this week. 


Oh yea.....they gave Mason back the (sterilized) plates they took out from the 2007 surgery.  One was kinda thicker (from the radius), one was thin and kinda bendy (from the ulna).  The quarter was not in his arm, it's just there for scale. :)


Wednesday, December 22, 2010

expletive deleted

Mason had his weekly appointment today.....AND HE HAS BEEN TURNING THE NUT THE WRONG WAY FOR A WEEK!!!  Ugh.

He was turning the way he was instructed, but that was incorrect.  To say Mason was angry would be an understatement.  However, we played a little catch-up with the aid of a pain killer, and we are on the right track now.  He just has to do accelerated wrenching for the next week.  We'll see how it looks next Wednesday.



Merry Christmas!!

Friday, December 17, 2010

maximum exposure

Okay, not really.  There will be no video.  But, I do have some pictures of Mason's arm without any covering.  I figure since he posted a picture of it on facebook that it is safe for me to do so.


However.......if you are squeamish, you may not want to look.


That was your warning.....


Here are the photos.  The first is Mason studying for his Geography final, which was this morning.  The blue pins sticking out on each end go all the way into the bone.  You'll notice the bar (giant screw) sticks out on the end closest to his hand...the length of that part of the screw will become smaller as he tightens the screw and lengthens the bone.  The white things are the spongy-forms that keep a bit of distance between the fixator bar and Mason's skin.  He has to change those every day.  He likes to leave the old nasty ones on Olivia's side of the bathroom, preferably on top of something of hers that will make her yell.






The next picture is just a close-up of the arm and the Geography book.  You can sort of see the rash all over his arm - he had a reaction to the solution they used to clean his arm prior to the surgery.  It is *extremely* itchy, and Mason's chief complaint, even above pain most of the time.



This is what we call "better living through science".  Crazy weird stuff.



Wednesday, December 15, 2010

tool time

Today was the unveiling of the arm.  I don't think Mason is ready for total exposure yet, so here is the PG version of his arm: 


As you can tell by the x-ray, the external fixator is just that - external.  It is a titanium threaded bar (think giant screw) that when turned in the right direction (righty-tighty. really.) it will slowly pull the bone apart at the break you can see in the picture on the right.  The bar protects the bone pretty well, so it isn't quite as fragile as you might think.  People have this done on their legs all the time, and they walk on them, so the danger of messing things up with everyday normal usage isn't too great.  Of course any activities that can result in a fall are right out.  Eventually maybe I can put real pictures of his arm on here, if he says its OK.

So when they said "wrench" they meant it.  A titanium wrench, metric.  Yes, it is personalized....the doctor did that.  Mason is to do one quarter turn four times a day, which will equal 1mm.  We are looking at somewhere around a 17mm total, but we have to be flexible on that, as it depends on how it's working, etc.


For some reason it didn't occur to me that it would HURT having the dressings taken off and the screws turned.  Doh!  Thank goodness for our fabulous nurse J who quickly made the pain go away.  We really like her.  Next time I will do better.  We will be visiting with the doctor every week for the next few weeks, then when the bone is where it needs to be we will schedule the next surgery. Yep, the poor guy has to have another surgery to take off the external fixator, take out the pins and put in another metal plate over the new bone to stabilize it.  
Mason has been trying really hard to find the silver lining in all this.  I think it would be hard for an adult to go through this, let alone a 14 year old boy.  I have always considered Mason a sensitive soul, but he is also TOUGH, which is good, because this is definitely not easy.  It breaks my heart that my child is learning the "life doesn't always go how we want it to" lesson when he is so young.  
But he received some "get well soon" cards today that really made his day :)

back to school

Mason went back to school yesterday, although grudgingly.  He was pretty concerned that someone would bump him in the halls, and that it would hurt.  The nurse gave him a 5 minute pass to avoid the crowds, but he didn't use it because they work right up until the bell.  He survived.


Today we go back for the unveiling and the wrench.  More soon.....

Saturday, December 11, 2010

Home again, home again....!!

Mason got released around 1:00ish.   We are both glad to be home.  His arm is swollen and sore, and he needs to keep it elevated for the next few days.  The pain medicine makes him a bit groggy, so he will probably do a lot of napping.  He goes back to see the orthopedic doc on Wednesday to learn how to use the wrench.
Good morning!
It is so nice to be on the other side of this event! Mason had a pretty restful night last night, which is in stark contrast to our last surgery experience. The nerve block was definitely our friend, and got him through the acute post surgical pain with essentially a dead arm. This morning his fingers are working again, and the vicoden is doing well at pain control. As soon as he eats and drinks they will take out his IV and get him ready to go home. But first we gotta wake him up.....not an easy feat.

Friday, December 10, 2010

Mason got a room on 5 Henson here at Childrens Mercy. He is sawing logs right now. Speaking of sawing.....his surgeon said that when she was doing the Osteotomy that the saw broke. Mason has some powerful bones I guess! I'm just glad we don't have to pay for a new saw.
They say Mason had a bit of trouble with nausea ( which would explain the longtime in recovery) so he hasn't eaten anything yet, but he has drank water. He said his mouth was the adobe desert. Hmmm. Anyway looks like he is in for a night of hourly vitals. Zzzzzzz.
The surgery is done. Whew!
He will be in recovery for another 30 minutes or so, but the surgery is done and the doctor is happy with how things went. I'll update when he gets settled in his room. Thanks for all the good vibes and well-wishes!!
Go time!
They just took mason back to the operating room. That's such a helpless feeling when he goes one way and we have to go the other.

It should take 2-3 hours to get everything done.

Things are running a bit late, and we are in a holding pattern, waiting for an OR. Mason's surgeon came in and "tagged" his arm and reviewed the procedure, so we are ready when they get the OR ready. Mason is STARVING. And thirsty.

Thursday, December 9, 2010

Surgery time is 10:00

I talked to the hospital a bit ago, and Mason's surgery is now scheduled for 10:00am tomorrow morning, so he won't have to check in until 8:30am.  So he can get a little more shut-eye in the morning, which is probably a good thing.  I was just thinking it was nice to be first because its less likely to be delayed if you're first. Oh well, back to that "be flexible" thing, right?


They did also warn me that this is a busy time of year for them, and there is always a danger of beds being full and his surgery being delayed or postponed.  Ugh.  Let's hope that doesn't happen!

Tuesday, December 7, 2010

New site for new surgery

I have switched Mason's site to blogger.  The old site no longer allows adding pictures, and I have a feeling I'm going to want to have some show and tell for this.

Mason's surgery is just a few days away....right now we are scheduled for the first time, which means we check in at (gasp) 6:00 am for a 7:00am surgery.  That's pretty early for a teenage boy.  However, if someone younger slides into the schedule Mason will get bumped to a later spot.  These are things we will know Thursday afternoon, when they call us with the final schedule.  You just have to be flexible. bleh.

We did get another set of eyes to look at Mason's chart, and they concurred with our surgeon on what to do, but also added a procedure.  They will also "install" a kind of metal guide along both sides of his radius to hopefully help guide it's growth in a straight path and help prevent any bowing of the radius as it grows more quickly than the ulna.

So the whole operation should last 2-3 hours.  He may or may not spend the night at the hospital, depending on how well they can manage his pain.  We shall see.

November 18, 2010 (from the old site)

November 18, 2010


We talked with the surgeon for an hour yesterday.

The plan this go around is to perform an osteotomy on the left ulna, take out the plates and screws from the last surgery, then implant an external fixation device to gradually lengthen the bone. This is a metal device that attaches to both sides of the broken bone (ulna) and slooowly pulls them apart, a millimeter at a time, allowing the bone to fill in and making it longer. The average growth rate is about 1 millimeter a day. We are looking to gain about 17-20 millimeters from the procedure, which will take around 17-20 days. Theoretically.

While this is *probably* the best approach, it is not without its problems. Being a teenage boy and having a metal robot apparatus sticking out of your forearm is not ideal. It's not even marginally ok....it just plain sucks. There is a chance of pin infection, but that can be dealt with by way of antibiotics. I'm guessing having your bone slowly pulled apart involves some pain as well. But, there are advantages. There is no itchy, stinky cast. You can shower, swim, use your arm normally, although not strenuously as in sports. The recovery time seems a little faster than the acute lengthening. It's only in place for a few weeks, then another quick surgery to take out the apparatus. And, if we're plodding along and we find making the bone longer actually makes the situation worse rather than better, we can stop.

Which brings me to the dilemma....what if. This is such an unusual problem that noone has a tried-and-true plan for us. We are basically proceeding on best-guess and what should work. This isn't what we want to hear. We want to hear its been done hundreds of times, or several times, or at least that it has been done before. However, Mason's particular situation is quite unique. So....while the actual surgical procedure has been done a gazillion times, we are not assured of success in this case. We *think* it will work. We just have to take a leap of faith, and that is difficult to do in this situation.


We have a date! 


Mason's surgery is scheduled for December 10. He wanted to do it ASAP because he is having quite a lot of pain during certain activities, but this is the earliest we can do. It is not the best timing, because he will miss a Kansas City Youth Percussion Ensemble concert on December 11. He has been practicing for that since late August. And, finals are the next week. However, we don't want to wait til January for various reasons, so we are going for it. We will figure out the rest.

We have a meeting scheduled with the surgeon for November 17, and then we will find out what exactly the doc is planning to do. All the nurse told me is that he "is a candidate for ulna lengthening". I am guessing that means a recovery time similar to the last surgery (6 months) When I find out what that means exactly, I will post it here.


October 14, 2010


We are waiting...

Since the end of March, Mason has had pain in his elbow. He did about 10 weeks of occupational therapy, with slight improvement, but lost any gains within a few weeks after he stopped. Before Mason had his first surgery the doc told him if he did not have the surgery, eventually the disparity between the length of the ulna and radius would pull his elbow apart. I think that is what we are now seeing as a result of recent growth spurt he is experiencing.

He had an MRI of his elbow two weeks ago, and the nurse told me it was "abnormal", although she did not have the findings in front of her. The doc who did the last surgery is waiting to consult with another doctor - an orthopedic extremeties specialist type - before she decides exactly how to proceed. We expect it to be surgical, and are hopeful we can get something on the schedule soon so he can heal up by summer.

Mason is unable to dribble/shoot a basketball without considerable pain, and has decided not to try out for the high school basketball team.....which is heartbreaking, but survivable. This is not an unexpected event, but is still burdensome. It is very difficult to lose skill sets like this - especially for a teenage boy. So far he is still able to play piano and drums...I am anxious to "fix" him before he loses that, too.

When I get some more information, I will put it here.





Before 9/07/2007                                                                              After 10/10/2007


Mason had some wacky growth plate defect that caused his ulna to stop growing while his radius kept on growing, resulting in a bowed arm. It was previously misdiagnosed as a benign bone tumor. On September 7 he had it fixed (straightened) surgically.


Original Diagnosis Below

In mid-June our family vacationed near San Diego California. While there, we took Mason to a skateboard park. That evening, we noticed his left wrist appeared "deformed", for lack of a better description. Something was definitely wrong, and although he insisted that it did not hurt and he did not injure it, we took him to the ER to have it examined. An x-ray was taken (see photo page) and clearly showed the ulna (the small bone on the pinky side of the forearm) not extending to the wrist. We were then refered to the Children's Hospital, where it was determined it was not broken (just like Mason told us). We were told to follow up with a doctor when we returned home, so we continued our vacation, then saw a pediatric orthopedic surgeon at home as suggested.

After more testing, Mason has been diagnosed with a solitary Osteochondroma in his left forearm. It is growing on the end of his ulna and has caused the ulna to stop growing, resulting in the gap between it and his wrist bones. This has also caused his radius (the large bone on the thumb side of the forearm) to bow, and the elbow is starting to show the effects as well. We think it became more noticeable because of a recent growth spurt Mason had, but it has likely been there for some time. At any rate, all of this can be fixed surgically with good results. Mason is scheduled to have surgery at Children's Mercy Hospital.

Check back for updates as we find out more information.