September Update

64 days.

That’s how much time between now, and the new date for Mason’s surgery.

He is now scheduled for Tuesday, November 22.  This was switched because there is an upper extremity specialist (with a limited schedule) who is joining our regular surgeon on this procedure.  We figure 2 heads/set of hands are better than one, so this is a good thing.  The plan is to keep him overnight, and follow him very closely, as he is now at increased risk for infection.

I have done some research on the procedure they will be doing, and it looks like there is a good success rates when done on kids with dislocated elbows due to ulnar bowing……resulting from injury.  Of course there is NO documentation about it being performed on someone with bowing that was not caused by trauma….but still I am cautiously optimistic. 

Mason will go in on November 2 for a clinic visit, and I think they are planning to do a bone age study on him to get a handle on how much more he might grow, since the discrepancy between the closed growth plate of the ulna and the rest of his arm seems to be pretty problematic.  The good news is that your arms and legs quit growing before the rest of you, so maybe we’re getting close to stability there.

For now Mason keeps marching on, figuratively and literally, as he is rocking the SMS drumline.  I will update after he has his visit early November.  Thanks for checking on him. :)

where to begin....

An update is long overdue, I know.  I guess the main reason I have not updated is because I was hoping for some good news to share.  Unfortunately, there is a shortage of good news where Mason's arm is concerned.

It became obvious fairly quickly that the physical therapy was not helping enough to warrant continuing.  As a matter of fact, it got more difficult instead of easier, and Mason's therapist cut him loose around the middle of May.  She said she felt there was more wrong than muscles and tendons, and she was right.  We went back to the surgeon and the x-ray showed that Mason's radial head is not where it should be.  It looks dislocated, but its not quite that simple.  The theory is that the ulna has a bow in it that is forcing the radius out of its normal alignment.  This means Mason has bone rubbing against bone at the elbow joint, and it is pretty painful.  It only seems to be getting worse as he continues to grow in every other bone in his body, and is making most everything more difficult and more painful for him to do.

After much deliberation with colleagues, the doctor has a plan to fix this surgically....and is willing to do this right away.  However, Mason wants to wait until marching band season is complete, as he has really been looking forward to participating in drumline. Band camp starts in 4 weeks. He just completed summer PE today - he took it this summer to make up for dropping it when he was on restriction from the last round of surgeries.  It seems there is no good time to have a surgery that will take you out of commission for 4-6 weeks, and put you on restriction for 4-6 months.  And of course, this is all best-case scenario, which we now know is not something we can count on.  Mason has an increased risk of infection because of the last bout with staph, so there is a very real possibility that he will have to take the evil medicine for an extended time after the surgery. Sadly, that would be more desirable than other possibilities lurking.

And of course, this will not be the end of things, but we can only look at the immediate future or we will go crazy.  We may go crazy anyway.

So, one can see why he would like to salvage a little summer, after living through a pretty crummy winter.  Because of this, Mason has tentatively scheduled the surgery for November 18.  This will give him Thanksgiving break to recover, and we can avoid having final exams the week after surgery.  (That was not the best planning last year!).  Of course there will be other things that will be missed or ruined as a result, but letting Mason have some control over this is important on many levels. There is a possibility that the pain will become too much for him to handle, in which case we will have to schedule in surgery and just deal with the fallout.

For now we are trying to enjoy summer, which is flying by at a record pace.

physical therapy begins

Mason started physical therapy for his arm a little over a week ago.  I guess technically it is occupational therapy, but the idea is still the same......trying to get mobility back.

The "normal" range for supination/pronation of the forearm is about 80-90 degrees, active, meaning you can do it yourself.  On Mason's first visit he measured 20 degrees active, and about 40 degrees passive.  Active is what you can do, passive is your potential - what can be done for you.  (yes, that is painful, having it done for you).  So as you can tell, he has a major deficit going.  :(

However, after only 1 week he was able to bring his numbers up to 40 degrees active and 60 degrees passive!!  I was very excited at this news!  He has been working hard, but it is sooo difficult because success comes in such small increments. 



Kinesio tape job.

 Last appointment he was measured for a splint, which if we choose to use it (I think we will) promises to increase those numbers even more.  His therapist believes it could make a difference, so we are waiting to hear what the insurance company says.  This is something that Mason will wear a few times a day for 30 minutes or so, and he will be in control of the pressure applied.  It is somewhat reminiscent of the external fixator, except that he won't wear it all the time, and it is addressing tendons and stretching them rather than the bone.  But it will hurt. sigh.


So the saga continues.  "Adversity introduces a man to himself." --Unknown

anyone else tired of this blog?

Mason had his LAST visit with the infectious disease clinic today!!   Woot! Woot!

He actually hasn't taken his medicine since Saturday.  We let him skip Sunday because it was his birthday (my baby is 15!!??) and he was playing drum set at 3 church services, (not fun if you're sick) and I thought he deserved a day off.  Then today we kinda skipped it too, because he got up late, and was going to the doc midday.....anyway, it's all good now, because he is officially, physician condoned, drug-free, "like a real boy".

A few weeks ago he made a tower out of his medicine bottles:

And today, he threw them in the trash:

What a long SEVEN WEEKS it has been since he started taking the medicine!!  There is *very* little chance the staph will come back....but I'm sure I will be paranoid for a little while longer.  It just seems so cool to not give out the meds 3 times a day! A little scary, but cool.

Mason's incision is looking well-healed by now.  He starts therapy next Friday, where he will begin working on strengthening his arm, and regaining range of motion.  I'm sure that will be painful, but I'm sure it's nothing he cannot handle. He has proven that he is an official tough guy.

almost there

Mason had a follow-up appointment with the orthopedic doctor yesterday, and the news was good.  His bone is looking great, no signs of infection or stress on the new bone growth.  So, he has been released from tight restriction and can now use his arm freely, lift weights, ditch the splint.  This is all welcome news!  He still is restricted from contact sports like basketball, snow skiing, jumping sports....so we have a few things to avoid for a few more months.  But all in all it was a satisfying visit.

Monday is the (hopefully last) visit to see the Infectious Disease doctor.  And the really big hope here is that his labs are good and he will be able to stop taking the bleeping medicine!!  I feel pretty confident that is the case - and so did the ortho doc, although she still defers to the ID doc.  I did tell Mason he could skip his meds on this Sunday, because it is his birthday :)  My baby will be 15 years old! Gasp!

Here is the latest picture of Mason's arm.  It is really weird to see it without a bunch of metal in it--all that is left is the guided growth plate that is supposed to keep his radius growing straight.  You can see the holes left in his bones from the newly removed plate pretty clearly, as well as the healed-over holes from previous hardware, and the larger, partially filled in hole from where the staph tried to eat away his bone (closer to the elbow joint).  Next time we x-ray him (in May) it will probably look a lot different.

Mason also received a prescription to start some physical therapy for his arm to try to improve his range of motion.  Before the surgery he had a lot of pain and limited pronation (palm facing down).  That made dribbling a basketball a big problem.  Now pronation is easy, but supination (palm facing up) is very difficult.  Although he probably will not regain full range of motion, we should see improvement - and ultimately without pain, although it may take a while for that. 

Looking forward to drug-free days ahead!

a picture is worth....

For all those who need (or just like) pictures with their stories, here it is:  the newest and LAST incision on Mason's arm!

This time he has steri-strips, which he prefers to the stitches.  His doctor tries to keep him happy when possible....which hasn't been often enough!

And here's one more tidbit:  I just gave Mason his LAST rifampin capsule!  Hip hip hooray!  He might kinda miss having bright orange urine every morning, but he won't miss taking the pills.  (sorry if that was "orange zone" information.)

new month

Mason went back to school today - starting a new month!! He finished out February with a visit to the Infectious Disease doc. He was hoping she would say he could quit the antibiotics, but she did not say that. She wants him to do 2 more weeks, then if his labwork is good (which we expect it to be) he will be done.  We persisted and talked her into ditching the rifampin, which I believe was a key player in Mason's dark moods. So, although there was initial disappointment at having the stay on the meds, having one less med (after today-last day-woohoo) will help a little - at least psychologically.  I know the clindamycin is still a harsh drug, and Mason is taking 3 times the dosage, at 5'8" and 130lbs that Scott took, at 6'3" 220lbs, for an infection a few years ago. I can see why he feels sick when he takes it, even with the probiotics and the zofran.  But, only 2 more weeks --it can be done!

Mason took off his own dressing Sunday night, a little early, just to "make sure everything is ok in there".  His incision looks very good, and we are becoming expert at judging incisions. :)  I forgot to take a picture, but I will do that this afternoon and post it.  It's a thing of beauty.   He is wearing a splint for the next several weeks, but that certainly beats a cast any day!!  His next orthopedic follow up is March 9.