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)

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!

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.

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:

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!

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.

nervous

Mason started to run a low-grade fever yesterday.  Could be nothing, but I am a little nervous because he did the same thing when he had staph.  I can't see his incision because it still has the hard surgical dressing on it that isn't supposed to come off until Wednesday.   I will be calling his doctor as soon as the office opens.Now would be a good time to send your healing thoughts and prayers his way. Thanks for checking on him.

3 days post-op

It was nice to be home for Thanksgiving :)

Mason hasn't felt great, but he is hanging in there!  This surgery is probably his most painful, because not only was his bone cut, but since it was an acute lengthening of the bone, the muscles and nerves, even his skin to some degree, all had to be acutely stretched as well.  So they are a little angry about that.  Also, his hip continues to be annoying to him - I suppose having a chunk taken from your hip bone would feel similar to a broken hip.  Anyway, he has effective pain relief medications, but they make him pretty snoozy.  I am hopeful that today he will be able to cut back on the narcotics a little so he can get up and around a bit.

Another issue that's probably contributing to his general malaise is that the Infectious Disease department decided that he *should* be on antibiotics for a few weeks after the surgery.  So, he came home with a prescription for clindamycin, which is the main antibiotic he took last year for the staph infection.  Blehk. But hopefully that will only be for a few weeks.  He did not test positive for staph, but they decided the risk was too great to not treat for one, especially since he has a sizable plate holding the bone together. We need that plate to stay!!!

Mason goes in next Wednesday for a follow up appointment with the ortho doc. I'll probably get some x-rays at that visit that I can post.  The plan is for him to wear a brace, not a cast (yay) which will be nice for showering, etc.  The doc said there will be NO drumming at all, until further notice by her.  However, she will release him to some piano playing fairly soon.  So that is some small bit of good news.  He has an appointment with the infectious disease department on Monday, December 5 to test his bacterial load.  This is the single most worrisome issue (says the doctors) because if the staph returns it can derail everything!

So, I will post after Mason's follow-up visit Wednesday.  I'm not sure when he'll go back to school. As of today, I can't imagine him going back Monday - he is still shuffling rather than walking - but I know with kids things can change quickly, so we will just plan to be flexible.  Thanks for checking on him.

overnight

Around 9:30 last night Mason was finally able to wiggle his fingers. His block was placed at 7:30am, so it was over 12 hours and he was starting to worry that something horrible had gone wrong.

No fears--the block definitely wore off. And when it did, it was like a wrecking ball swinging through this room. Nothing happens fast enough when your child is in that kind of pain, but they finally were able to get things under control. I was picturing his bones being chiseled and the muscles and ligaments being spread, and I could picture all this nerves screaming in protest.....and I was powerless. Sure, I can lean on the nurses, but I discovered last night that I no longer have healing powers. The mommy medicine of kisses, cool cloths on the forehead, holding his hand, stroking his face.....none of that helps at his age. In fact, what was once a comfort is now an annoyance. And this is how it should be, as he is growing up. But it was a reality check for me. I have to find my way to be the support he needs now, so I am learning. It's weird.

Anyway, we seem to have the pain under control now. Masons surgeon came by early, followed by a gaggle of other various doctors, some looking not much older than Mason. This is a teaching hospital after all. The doc says we will see how he does this morning and if all is well he will head home this afternoon.

I will update from home where I have a real keyboard for typing. I love my iPad, but I get a little long-winded for it to be comfortable.

resting comfortably

Mason is in room #1 -- first surgery, first room I guess -- on 5 Henson tower. He has taken a few sips of Gatorade, and woke up long enough to tell me to "stop touching me please"! It's hard to be a mom sometimes. He also said his hip is sore--he can't feel his arm yet because of the nerve block. That will probably wear off this evening, and I'll be glad to be inpatient when that happens, cuz they have the good stuff here.

So he did get the bone graft from his hip, but his radial head is staying in place without the aid of any donor ligament. It was decided that we would stay out of the elbow joint as much as possible for now, and see how this works and if his cartilage will regenerate itself in that eroded joint. We did see the x-rays of the elbow before and after, and although it isn't perfect, it sure looks a lot better, alignment-wise! Hopefully this will eliminate his pain and allow him better mobility with his arm.

He should become alert in the next couple of hours, and we'll see how he feels then.

done!

Mason is in recovery, and we just talked to the surgeon who said everything went well. He will be in recovery for a couple hours (he tends to be slow coming back) and then will move to a room on 5 Henson.

More info later--thanks for checking on him!

on time

They took Mason back for surgery about 7:30.....so it looks like being first has its perks.

first in line

The hospital called and left a message that said Mason is to report at 6:00am tomorrow. I guess no one told them that he is NOT a morning person. Ugh.

Nothing to eat or drink after 4am - so I'm guessing his surgery is scheduled for 8am, although they didn't say in the message. The doctor said he would be first on the docket, so things should be underway by 8:00, I would guess, barring any last-minute emergencies that might keep the ER or the surgeons busy.

I will update this blog from the hospital tomorrow after we talk to the doctor and are in the waiting room.  Thanks for checking in.

November update

"I have a new philosophy. I'm only going to dread one day at a time."

Mason had his pre-op clinic visit today, and we got quite a bit of information during the visit....so much that it was overwhelming!  

First off, the surgeon made it very clear that this is not a routine operation.  In fact, I believe she used the words "major deal" and "tricky" in her description.  She has some concerns that she wanted us to be aware of, number one worry being the risk of infection.  While the last infection was contracted through the pinhole from his external fixator, and we won't have that kind of situation this time, there is a fear that staph bacteria doesn't really ever "go away", it just gets walled off (cellularly speaking) and contained. But, cutting into that area could open the floodgates again.  So, to guard against that she will be doing her best to avoid the area where the infection was located.

While there were many other issues, infection seems to be the biggie.  Mason will get antibiotics through an IV while in the hospital (he will spend at least one night), but will not get a prescription for that when he leaves.  Seems strange, but the docs say that would not prevent him from getting an infection, and might in fact make his strain become resistant.  So I will be on pins on needles between visits, worrying about infection. I'm hopeful we would recognize it was happening this time, but I know that reactions can be different every time. And of course, if he does contract an infection, they will treat it much like they did last time--the evil drug therapy.

So here is the basic scoop of what she is going to do.  She will be performing an acute lengthening/osteotomy on the ulna bone to straighten/lengthen it so it will allow the radial head to slide back into it's correct position.  That means she will cut, then pull the ulna bone apart, straighten the bone,add some bone graft - likely from Mason's hip - and put it where its supposed to be and plate/screw it in place. Then she will put the radial head back into the elbow socket - and make it stay.  To do this she may need to use donor ligament to tie the joint back together. There are *a lot* of unknowns going into this procedure, and we are going to have to be extremely flexible, as we won't know exactly what all will need to be done until the procedure is underway.  There will be two surgeons, our regular orthopedic surgeon AND an upper extremity specialist, who deals a lot with nerves and such, another area of concern in this procedure.  

That is the procedure in a nutshell, but there is so much other stuff to think about.  

Our number one goal is to make Mason pain-free.  Our number two goal is to increase his range of motion.  I want both goals realized.

This picture is of the offending elbow.  You can click on it to make it larger, and you can see how the radial head is sticking way out of the socket. (on the right side of your picture).  This causes total bone on bone action in his elbow, which has caused the joint to erode.  We are hoping that once the elbow joint is functioning more normally, that it will heal itself.  If that does not happen...well then, that is a whole new story.  

On the left is Mason's left forearm, where if you click on the pic to enlarge it you can see how the ulna has bowed, and is pushing the radius out of alignment.  On the right is his right forearm, which is straight, with a normal elbow joint.


So, I have my work cut out for me, worrying for the next few months!!


Right now his surgery will probably the first one of the day - it is scheduled for Tuesday, November 22.   I will find out the exact time the day before.


** A few people have had trouble posting comments. I think I have fixed the problem - you can now pick "anonymous" as your profile if you don't have a gmail address, and type in the verification code it gives you, and you should be able to post. Thanks for checking in.

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.

cautiously optimistic

We did beat rush hour, and got home about 3:30ish.   Extreme hunger was our first order of business, now we are working on pain control.  So far so good.  I am a little leery of the overnight hours after our last outpatient experience, but I'm hoping that I'm just being paranoid.  I will be much more comfortable after tomorrow gets here, and Mason is consistently comfortable.

The surgeon said the new bone growth looked great, and all the tissue looked great - no signs of infection.  She also said the hole in the bone from the infection was already filled in.  So now we just have to get the screw holes to fill in, and that new bone to get good and solid.  She wasn't sure on how long that will take - till she thinks it looks good to her I guess.  Somewhere in the neighborhood of 6 weeks or so, subject to change without notice.

This morning Mason was starving, of course, but he said he actually felt the "best in a long time", because he couldn't take anything by mouth - including his antibiotics.  It was a nice reprieve, however, it is short-lived. They informed him he has to start back on the oral medication this evening.  Oh well.  He has an appointment with the infectious disease doctor on Monday, and she is the supreme commander of medicinal torture.  I am hopeful that she will tell him he is DONE.   We shall see how his labs look on Monday.

This morning Mason seemed so much more peaceful than he has before other surgeries....maybe it was the good vibes and prayers people were sending his way, or not being on the horrible medicine, or maybe it was because he knows this is a corner turned, but it whatever it was - it lightened my heart a little to see it.

Surgery is done, Mason is in recovery. All is well :-)

Things are on time for a change!
They just took Mason back to the OR. The room is reserved for one hour, which is how long they told us the procedure will take. More later.

sleeping in tomorrow

Mason's been assigned the 1:00pm slot for surgery tomorrow to remove the plate in his arm.  This mean he gets to sleep in, as we don't have to check in downtown until 11:30. This procedure shouldn't take more than an hour or so, so hopefully we will be able to head home before rush hour.Then again, things tend to move slowly in the hospital...I will keep you posted.

retrospective

Approaching what we think/hope is the last surgery tomorrow, I have been thinking about this uncommon journey Mason has traveled.  It has not been a path we really expected, or one that anyone would want to tread.  I am hopeful there will be some sort of awareness in Mason, because of these hardships, that will enhance his life in the future.  I believe in the silver lining.

Even with a hunk of metal sticking out  his arm, Mason had "a great Christmas".  By that time we were hardly even aware of the fixator, although Mason assures us he was a constant source of gawking at school, or any time he was out in public.

Close up of the dreaded external fixator, complete with the screw Mason turned 4 times a day for 3+ weeks.



Who knew that external fixators made a handy iPhone stand?  "Neccessity is the mother of invention."



The family pet, Hank was keenly aware that something was amiss with Mason.  Normally boistrous to a fault, Hank was gentle with Mason, and kept pretty close tabs on him for several days after he came home from his surgeries.  Of course, he did rip out one of Mason's stitches too, but after all - he is a DOG.

The pictures below are kind of nasty to look at, but I'm looking at it as a sort of community service. If you have a wound that looks like this, coupled with severe pain, you are in trouble.  You need to get to a doctor, toot-sweet. Staphylococcus aureus is nothing to play with, as evidenced by Mason's 2 debridement surgeries to clean it out.  When it settles in your bone it can cause "destructive granulation", which is basically the bone turning into mush.  Thankfully the infection in Mason's bone was not near the new growth.  The hole the infection left will fill back in and be good as new.

Being inpatient in the hospital isn't fun.  Mason didn't even find the wheelchair amusing, although Olivia did!

One of the worst parts of this whole experience has been the chemical cocktail Mason has been forced to swallow 3 times a day for.....28 days or so?  Suffice it to say he has experienced many side effects, and is looking forward to being off the dope.  He did tell me he would rather take the meds for another week or so than end up with another infection, so I know that at the very least, he has learned delayed gratification. "So shines a good deed in a wicked world." ~ws

a good day

The orthopedic visit today was a good one. Mason's new bone growth has exceeded expectations, and the doctor will remove the plate (and the cement/antibiotic bead) on Friday, February 25. She would have done it this Friday, but she will be out of town for a meeting.


This will be an outpatient procedure, and recovery time should be better than his last series of surgeries.  And probably the best part is, he will soon be able to stop the chemical intake! The infectious disease doc wants him to continue them for about a week or so after the surgery, but just having a quit date really is helpful. :)  The added Zofran has helped with his nausea, but one of the side effects of that particular drug is drowsiness.....so then we have to add Red Bull to combat that.  It is/was a seemingly never-ending pharmacopoeia cycle, and it will be such a relief to go back to the mundane world of one-a-day-if-you-remember multivitamins.


So, we begin the end of the surgical portion of this saga! Hooray!!  I have a feeling the therapy portion of the journey won't be a lot of fun, but it can't be worse than what has already been overcome!


When we find out what time the surgery will be I will post it here. 

trudging along

Mason had his Infectious Disease Department check yesterday.  Everything looks pretty good.  There is still a small amount of swelling, but the tissue looks healthier, and things are about as good as they will get while the plate and ceramic beads are still inside his arm.  His sed rate, which is how they check for inflammation in the body, is under 20, which is good.  His CRP (another test for inflammation) is normal. The antibiotics are working. 

Mason continues to feel sick on the medicines, so we have added one more drug, Zofran, to his daily intake to try to combat the nausea.  He has already taken a couple hundred pills since he was released from the hospital, and it is getting OLD.  I know we should be thankful for so much, and we are, but we are also soooo tired of all of this, and bummed out.  I really hate complaining, because it doesn’t help anything, but today I am complaining on behalf of Mason.  This really SUCKS.

Wednesday Mason has an orthopedic appointment, where he will be x-rayed to see how the bone growth is going.  We are expecting an early-March date for removing the plate – perhaps we will be able to schedule that this week.  No matter how many surgeries your child has, it doesn’t get any easier to have them walk down that hall, away from you and toward the operating room.  I know there will be “life-lesson gifts” from this whole experience, but it is difficult to see anything right now but the pain.

Sorry for the downer post – cheap therapy for Mom I guess.

Here’s something kind of funny….if you have a sick sense of humor. (okay, I do. It’s better than no sense of humor) Yesterday afternoon the nurse called from Olivia’s school to come get her – she had a bad headache.  Since Mason had the doctor appointment downtown,  Scott came home and stayed with Olivia while I took Mason.  While Mason & I were sitting in the pharmacy waiting on the Zofran (by the way,  the insurance company will only approve 12 tablets at a time, and he takes 3 a day –grrrrrr) I got a text message from Scott.  Olivia was vomiting, and where was I???   It was kind of reminiscent of the time I left Mason in the hospital for a cup of coffee and came back to Mason puking into a bucket Scott was holding.Even Olivia saw the sliver of humor in that.  J

dem bones

Today was another doctor visit, this time to the orthopedic doc.  It was a fairly uneventful visit, which is GOOD!

The doctor says Mason is piling up lots-o-bone in the distraction area, and is looking at perhaps early March to take the plate out.  Mason is thinking that would be a horrible birthday present (his birthday being March 13) but I guess we will see what happens.

I have to admit that this time, I do actually see where the bone is growing in on the x-ray! I guess all that milk he has been drinking, along with the beating of drum sticks is paying off.  After he has the plate removed he will wear a splint for a month or two, and will still be on restriction from contact sports and heavy lifting.  But by summer wakeboarding season he should be good to go!

Mason also got his stitches out today!  Hank had made an effort to help out with that this morning, and had actually (accidentally) taken out one of the stitches. Mason said it hurt about the same when the nurse took them out as when Hank's claw took it out.  At any rate, his incision is looking good, and we are very hopeful that the new drugs are going to keep things moving along in the direction we want.  Taking the drugs is for sure no fun, but I'm going to get a different probiotic the doctor recommended to see if we can get rid of the general yucky feeling Mason has while on the dope.

Next appointment is Valentines Day with the infectious disease department!

one pill, two pills, red pill, blue pills

Dr. Seuss' influence is showing up, as Mason discovered this morning.

The red is Rifampin (btw - the rumor is true, it does cause you to pee Tang),  the blue pills are the Clindamycin, and the white pills are probiotics to keep the other pills from tearing up the intestinal tract. The number of those can vary, depending upon need.

All this 3 times a day.

bleh.......

Today we explored the Infectious Disease department at Children's Mercy.  


The evil staphylococcusaureus is attempting to rear its ugly head!!

staphylococcusaureus

So we are fighting it by doubling our dose of clindamycin, and adding another weapon: rifampin.  Together, these two drugs/weapons are predicted to slay the evil staphylococcusaureus!!!

The side effects of the new drug are similar to the clindamycin, with one important distinction:  rifampin is known for turning your urine orange.

It can also turn your tears or sweat orange.  This should be interesting....

We go back to the orthopedic clinic on Wednesday of this week to see what they have to say.  We need to keep the staphylococcusaureus  at bay for at least a month before we can take out the plate, so keep your fingers/toes/arms/legs etc crossed for us!

(did you guess-- I love the guy's pronunciation of staphylococcusaureus )

finally!

We are home!
Mason will be taking clindamycin (antibiotic) for awhile, and he will be followed closely by both the orthopedic department and the infectious disease department.  They want him to stay out of school until Thursday or Friday, or later if he still is feeling bad.
The plan now is to keep him healthy and let that bone grow and consolidate.  That should take a couple of months, then another surgery to take out the plate.
We are all exhausted, but Mason is really still very tired.  


During one of the times Mason was very "animated" during his hospital stay, he decided his bacteria, staphylococcus aureus, sounds like a dinosaur name.  Click here to see what he means--he is right.  :)

sunday afternoon

Mason is back in his room, pain medicines are in and football is on.


Surgery went well!  The doc said it looked very clean, so she was able to close it up.  She said there was no more bone loss and no more infection apparent.  She irrigated it an extra time for good measure, put in some antibiotic-laced orthopedic cement beads and sewed him up. 


More good news is that the staph strain is not a Methicillin-resistant strain.  We are now going to cut out all the antibiotics except clindamycin, which he will begin taking orally this afternoon or tomorrow.  If he is able to tolerate that well he will probably go home tomorrow!  Wooohooo!


The plan at this time is to try to keep the staph at bay for a few months, until the bone consolidates in the distraction area.  Once the dr. feels that is at an acceptable level she will go back in and take out the plate and the cement beads.  Once the plate is infected there is no chance of leaving it in place, but we really need to keep it in there as long as possible, otherwise we would have to go back to an external fixator to keep it in place (no stretching, tho) because a cast can't keep it absolutely immobile.


After the plate is out, then he will continue to antibiotic therapy for a few more weeks or a month to make sure the staff is out of his system.  They have tests that we will be doing to monitor the bacterial load and inflammation in his system, so we will be able to react quickly if things don't go as planned.


Mason is ready to be out of here!!  Actually, he said if he didn't have to have surgery it wouldn't be a bad place to be.  Everyone here is soooo nice. I don't know why all hospitals can't do it the same way.  But we are looking forward to being home!  

Mason is in the surgery, we are in Ronald McDonald family room. Olivia and I worked at the Ronald McDonald house before but never imagined we would be on the receiving side.
Surgery should be about an hour or less.

10 is the new 8

Yep.  We are delayed.  Seems a couple of emergency appendectomies took our OR.  So instead of starving Mason for 8 hours, they are starving him for 10.  (his words)

Last night was pretty good.  Mason spiked a high fever around 11:30 but by 1:00 was pretty comfortable, and has remained fever free.  That's kind of how bugs do it, I guess.  The surgeon came by this morning and said the latest word is that the germ in Mason's arm is staph, although so far it does not show MRSA characteristics. (Yay!!) The culture is still growing, but this seems promising, and she *may* close his arm today if it looks good when she is in there.

Will keep you posted.

up and down...and up

Mason seemed to be doing well this morning until around 9:30.  Scott & Olivia arrived, and I headed off to grab a cup of coffee down the hall.  When I got back, Scott was holding the vomit bucket for Mason, who was complaining of an extreme headache.  His heart monitor alarm was blaring because of the pain and the vomiting elevated his heart rate, Olivia was in the corner trying to avoid eye contact with the vomit bucket, and Scott was left holding the bucket.

The infectious disease doctor happened upon all this, and asked if Mason had ever suffered migraines - he did when he was in elementary school, but hasn't had one in several years.  She said it could have been triggered from the stress of the situation. Mason didn't think it felt like a migraine, he thought he had a reaction to some medication.  He had just taken doses of 2 different antibiotics, cefazolin and clindamycin.  Since then he has had more of those same medications, and was fine.

At any rate, they took him off the morphine drip (goodbye for now) because that is known for headaches as a side effect.  After making sure he could keep it down, they gave him an oral vicodin (hello, old friend) and that seemed to do the trick - eventually.  He spent a good part of the day with an ice pack on his head or asleep.

However, he is now perked up considerably.  Could be because he got some afternoon visitors today, who came bearing gifts:

home made cookies

+ candy

= good living. Yay!!

Also, he has been given a reprieve from the land of IV!  He is currently, temporarily FREE of the IV and the heart monitor.  All he has tethering him is the wound vacuum, which continues to suck goo out of his arm. His pain level is good, his head quit hurting, all is well.

Mason can have nothing to eat or drink after midnight, in anticipation of an 8am surgery tomorrow.  We will know a lot more after the surgery.  Hopefully the last one for a while.  

in between

Mason had a pretty good night - as good as you can expect in the hospital with someone waking you up every couple of hours!!  And the word on the street is that Lamar's donuts are comin' his way. Sweet!!

Mason's surgeon came by this morning - his next cleaning is scheduled for 8am tomorrow morning.  After she goes in she will know what the next step is.  We are still waiting on the lab culture report. Preliminary reports showed strep, and it would be good news if that is all there is.  The doc said it is likely to show staph as well, so we will wait and see.  She has a plan for whatever the results are, we just have to wait on that to see how to attack.  She would not give me a go-home scenario/time frame yet. She said we would discuss after tomorrow.

We have seen some familiar faces since we've been here.  Mason's favorite care assistant has been in, and a couple of the same nurses he's had before.  Sadly, the receptionist in the surgery waiting area recognized us!  I could have gone all my life without being in a children's hospital.....but if we have to be in one, I will say this is a good place to be.  We are fortunate to have this available so close to home.

the low down

Mason has eaten dinner and is sleeping intermittently...a slave to the morphine drip, which is ok in this instance. When we got to bring him up to his room he was much more alert than he has been after the other surgeries. I think that can be attributed to the absence of toradol in his pain killer regimen.  They did have a little trouble getting the pain under control, but now he is using a pca pump - which is the magic button for the morphine.  

He is also getting IV naloxone to control the side effects of the morphine, and IV clindamycin, which is an antibiotic.  


The surgeon irrigated and debrided Mason's arm where the infection had set in - around the pin hole closest to his elbow, and near the plate.  We are speculating the infection started at the pin site, which is not uncommon for people who have external fixators. At any rate, she got it cleaned out pretty well, but there was a "defect" on his bone, meaning a hole in his bone, either from the infection itself, or from the body killing cells to fight the infection.  She assures us it is not a dire circumstance, that the bone will regenerate and be fine once we get rid of the infection. She also removed the screw closest to the defect, as it didn't have a good hold in the bone anymore.  


Mason now has a wound vacuum that is continually removing the fluid build-up in his arm - the pressure from the infection is super painful.  

The bone scrapings, nasty puss, etc. was sent out for culture to find out what the culprit is.   Looks like staph, we are HOPING it is not MRSA.  We should know sometime tomorrow what kind of bug we are up against.   We have another debridement surgery scheduled for Sunday morning.  If it looks really good when she does that one she may close up the wound and we can manage the antibiotics from home.  If not, he may stay for more IV antibiotics.  It all kind of depends on how the cultures come back, and how things look Sunday morning.  We are just going day by day.


I am hoping he gets a good night's sleep tonight....they are taking vitals every hour right now, but should be moving to every 4 hours soon, which will be nice.  He is having bad dreams every time he sleeps - from one of the medicines I suppose.  And the antibiotic put a horrible taste in his mouth that we are trying to get rid of.


Thanks for checking on Mason, and for all the texts, emails and such.  I'm hoping he doesn't go too stir crazy having to stay in the hospital for awhile.  Actually, I guess I hope he feels good enough to be stir crazy!!

Mason is now in room#10 in 5 Henson. He looks good and has already requested food. I will update about surgery info after I get my laptop out of the car, and after mason eats.

Mason just went back to surgery. Shouldn't take more than an hour or so, then another hour in recovery before he gets a room for the night. I will update after he is in a room.

another friday

Mason is scheduled for surgery tomorrow at noon at Children's Mercy (downtown).  He will check in about 10:30, and will be staying at least Friday night....we shall see how things go and how long his visit will be.  I will update after the surgery when we know more.  
Below is a random cute puppy to cheer me up. :)

another setback...

I was thinking something was not right because of the high pain level Mason has had this week, and then yesterday his incision/pin sites started looking menacing.  Today I took him into the doctor.

Mason has an infection in his bone where the plate is.  He will have surgery this Friday 1/21 to have it cleaned out, and will spend the night.  The doctor mentioned the possibility of another surgery on Sunday, depending on how things look inside, so we may be in for a weekend of hospital "fun".

This is a complication that was mentioned before each of his surgeries, but somehow you never think it will really happen.  Mason is overwhelmed.  I am overwhelmed.

aaaahhhhhh....

It must feel good to  have that wrapping off his arm!  Mason's "new arm" was unveiled at his appointment today, and he was pretty happy about that.  No cast, just a splint to wear when he leaves home. His arm looks straight and pretty darn good! His incision is longer than I was expecting, but it looks good.  The holes left from the pins were not closed up (to prevent infection), but they don't look too bad.  They will heal quickly.  Inside his arm, under the muscle, Mason now sports an "8 hole mini-fragger" plate with 6 screws holding his new bone together.  That will stay there indefinitely, even after the bone is fully grown in.  Sounds like name for a half brick game.

The pain after this last surgery has been harder to get away from.  The doctor thinks its because of having 2 surgeries so close together, that his body is just worn down a little. Today was a little better, especially since he got some freedom from that cast!  Mason was very thankful for the 2 snow days this week, because that gave him more time to try to recuperate.  We're just taking it day by day now.  He goes back in 3 weeks for another look.  He is still on restriction from everything except music (drums, piano) but he has to do those in moderation.


Thanks for reading along.  This has been a crummy way for Mason to spend his winter, but hopefully it will give way to a fabulous summer and sports-filled future!  I will continue to update progress as it happens!