Stressed!

Aye-Aye-Aye…school may have ended for the summer, but it’s been no break for us.  Just in the last two weeks we have made two trips to Louisville and two trips to Nashville, including for surgery.  And, if that wasn’t enough, now we must plan for a new leg surgery in Florida in the very near future.

We’ve been in the process of getting new braces for Drew as he has grown several inches since being fitted for his new set and no longer fits his current set.  So, we’ve made several trips back and forth to Louisville to have new braces molded and fitted.  This process has been complicated by the fact that this particular provider doesn’t make the braces in house and the third-party manufacturer apparently has no professional business practices turning a 2-3 week process into a 6+ week process as well as improperly forming the braces requiring an unplanned trip to Louisville to correct.  Mental note to self: when shopping for a new orthotist, must find one who makes the braces in-house.

Before I move on with the series of events, a little backstory in case you haven’t been following: Drew has a metal rod in his left femur to prevent a fracture like that that occurred on his right during therapy and we have discussed having it removed at some point.  In April this year, during a regularly scheduled follow-up with Dr. Paley, we learned that at some point Drew experienced a stress fracture above his ankle (unknown how or when this occurred).  The fracture causes Drew’s left foot to internally rotate which must be corrected with surgery.  We all agreed that it wasn’t urgent to rush Drew into any surgery, so we agreed to schedule surgery to remove the rod and correct the fracture summer of 2015.

Ok…now:

So, after weeks of pain and suffering for Drew caused by his ill-fitting braces, handful of rude and emotional calls to the orthotist, multiple 2.5 hour trips to the orthotist, you’d think that the trouble would stop there, right?  Well, this is the Gattens you are dealing with and nothing is ever easy for us.  Turns out that the new left brace makes Drew’s left foot’s rotation more prominent causing a trip hazard.  Drew is unable to walk with his new left brace.  Apparently, his old left brace was modified, seemingly unnoticed by Dr. Paley, to counteract the rotation.  The new brace is in neutral position therefore the rotation is more noticeable.  The orthotist said she could also modify the brace to compensate, but I would need to discuss with the orthopedic doctor first.  A half dozen emails later, Dr. Paley asks to schedule the surgery sooner.  😐

What does this entail?  Assuming it will be just like his right femur fracture, an internal plate and pins will be placed around the fracture to correct the rotation, he’ll wear a cast for six weeks and then undergo another surgery to remove the internal plate.

Obviously, this is complicated: trying to figure out how we can afford another two trips to Florida, fly or drive, whether we should stay (and can afford) in Florida as opposed to returning to Kentucky with a cast, fitting these two surgeries in without missing a bunch of school as well as trying to fit it in with an upcoming tonsillectomy and follow-up.  And, I’m getting absolutely no help from Dr. Paley when it comes to answering my probing questions designed to help us make the smartest decisions to work this all out.  As genius as is at limb deficiency correction, he’s not the easiest to work with regarding communication.  OK, rant over.  I really do appreciate Dr. Paley and have nothing but respect for him when it comes to his surgical expertise.  He’s so busy making miracles and improving lives, he can’t respond to email, which is a good problem to have I suppose.

Even the Tin Man with no heart couldn't take this face from Drew anticipating a needle.
Even the Tin Man with no heart couldn’t take this face from Drew anticipating a needle.

This in itself is stressful enough.  But, we’ve also been quickly approaching an unrelated surgery for Drew: a tonsillectomy.  We had a pre-op appointment in Nashville on Friday where they did blood work much to Drew’s dismay.  As is procedure when anticipating any type of invasive surgery, we consulted with Drew’s hematologist to monitor his platelet level.  After over five years of a stable platelet count, and nearly two years of a count of higher than 100K, we didn’t sweat waiting for the results.  But, lo and behold, his platelets were 72K (normal is 150K+).  We were very surprised by the sudden low number and can only guess that his strep throat a month earlier caused the drop.  Luckily, they were still high enough to proceed with the surgery without any transfusion, but recalling the recent stories of devastating bleeds in two normal children in the US, hearing Drew’s low level was disconcerting. IMG_20140610_123550

Drew, justifiably, was not excited about having his tonsils out, but it was simply necessary.  Drew has had obstructive sleep apnea for at least two years and it needed to be corrected.  We checked-in to a hotel Monday night and arrived at the hospital at 5:30 am on Tuesday.  The surgery went well, although it took about twice as long as they had explained making us worry.  The surgeon said that Drew’s tonsils were blocking 75% of his throat.  He also removed his adenoids which were blocking 60% of his nasal cavity.  And,while he was in there, he went ahead and replaced Drew’s tubes in each ear.  Two for one! Bonus!

In a hushed voice, "Observe, folks, this vary rare, almost extinct, behavior of this amazing creature."
In a hushed voice, “Observe, folks, this vary rare, almost extinct, behavior of this amazing creature.”

The biggest problem is his breath!!  His breath would make a sewage tankstinky breath cringe.  And, he’s acting a bit like a wild animal in captivity with his refusal to eat or drink.  If we were worse parents, we wouldn’t practically force water and other fluids down his throat.  It’s gotten a little better now as all we have to do is ask nicely and he’ll take a sip whereas yesterday we would practically have to yell at him and shove the straw into his mouth as he cried and whimpered.  We’ve already warned him that today is his last day of refusing to eat.  Tomorrow, he must eat SOMETHING.  Pudding.  Cake.  Ice cream.  We don’t care.  But he must eat something.

We were hoping to get this tonsillectomy out of the way and look forward to nearly a year of downtime with little medical needs, but it looks like that is a long shot.  I can say one thing though: we are one hell of an interesting family!  We are never bored.  That is for sure.

 

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