Directing Doctors

Growing up I was a really sick kid and it started about the same time my long term memory began.  First it was chronic ear infections remedied by tubes in my ears, that was kindergarten.  During the majority of elementary school I battled chronic strep infections becoming a pro at getting those ridiculously long q-tip looking sticks shoved into the back of my throat without throwing up on the doctors.  In 5th grade I came down with pneumonia in both lungs and was out of school for a month.  I remember my mom taking me to see our doctor after hours, my feverish body barely able to sit up on the bench in the dark lobby.  Next up was mono and I was in 6th grade.  It took two months to diagnosis, I was in and out of the nurse’s office, regularly being sent home with fevers, resting for a few weeks, going back to school, and having to start the process all over again.  At her wits end my mom took me to see our pediatrician, Dr. Charles, we’d had the same one for as long as I knew, and in his desperation he gave me a shot of epinephrin where I turned ghost white and watched the look of horror on both of their faces.  Quickly the next shot reversed the reaction and I was OK, for now.

Then my mom got an idea and demanded they tested me for mono and sure enough, it was positive.  I had to be hospitalized for liver and spleen complications and was being watched around the clock in case my spleen erupted (and thank god it didn’t). I ended up home from school for 6 months, and with two tutors was able to finish up the year with my peers, just barely. But no, the saga didn’t end there.  In high school I had chronic sinus infections and was out of school a lot, again.  There were definitely teachers who doubted the validity of my illness but what can you do, I certainly didn’t choose to feel this way and as a good student involved in a lot of extra circular activities, I didn’t shy away from the school atmosphere either.  I didn’t choose to spend so much time watching reruns of I Love Lucy and turning People Magazine into my bible. Things didn’t turn the corner for me until I had my tonsils and adenoids taken out and you wouldn’t believe how long that debate had gone on in my household.  Of everything I remember about my Grandma Dot, one of the clearest memories I have is her constantly pestering my mom about having those pesky things removed from my body.  So Dr. Charles sent her to Dr. Oppenheimer and he would look at my mom and say, “Well, you have to bring her in here when she’s healthy so I can really tell you whether or not they should be removed.”  And my mom, exasperated to no end would reply, “But she’s never healthy, that’s the problem!”

After having the surgery I was able to enjoy a relatively healthy life in college.  I had freedom, I had alcohol, I had no parents, and I had my health; it was kind of amazing.  I would get the flu and either a sinus infection a cold or bronchitis, and ended up being sick about twice a year.  To this day it’s still about that way and now almost once a year, thanks to some of that amazing mom immunity I seemed to have gained since having Aleck.  Craig used to be the one never sick, now I get to watch over both of them as I narrowly miss whatever stomach bug our little man brings home (kenohora, poo poo). So what’s the point of all of this, you may ask, as I wax on about my childhood illnesses.  The point is my Grandmother was right and my mom was right but she was having to fight these doctors who wouldn’t give her the approval she needed to get done what she knew she needed to get done to give her child a healthy childhood.  I feel that most people think that all doctors know everything related to their specialty and they know a lot, it’s required for the title, but there is a great divide even among doctors in the same specialty. Many people think that whatever treatment their doctor prescribes is the same treatment that they would prescribe to anyone, and that all doctors of that specialty would agree on the same courses of treatment. For those of us who’ve logged countless hours meeting doctors we’ve all come to find out that’s just not true.  The medical profession is a percentage of knowledge and study, yes, but it’s a large percentage of experiments and experience.  If this pill doesn’t work for your infection, try this one. Well, we ruled out all of these things, OK, let’s try this.  It becomes increasingly important not to settle for an answer if you have an ongoing battle, but instead try to find THE answer, the one that fits your needs the best and your vision for your future, or in our case, Aleck’s future.

 

After repeated meetings with our hand specialist of choice and meeting another highly recommended hand specialist in the area I started to follow what the other moms on my AMC (Arthrogryposis Multiplex Congenita) Facebook group were doing and saw that the doctors who knew the most about everything we needed answers on weren’t here, they are in Philadelphia.  Now I don’t recommend flying out of state for a cold or virus, but when you are asking questions no one is answering, and when you are suggesting ideas that no one knows enough about, and when your doctor sits in front of you saying he has to research this and that and get back to you and he’s not getting back to you, then it’s time to go to the City of Brotherly Love.  This was our summer vacation.

We went to visit the chief of staff, a top hand specialist in Shriner’s in Philadelphia who’s been successfully doing muscle transfers for years, to get ourselves on the right track.  This place was packed.  I’ve never seen the Shriner’s in Chicago as filled to the gills as this location, waiting rooms left and right filled with so many different types of battles you couldn’t help hug your little man closer and thank someone that this, your struggle, is the one you were saddled with, because I can’t even imagine walking in many of the shoes of the families we saw around us.  Dr. Kozin didn’t disappoint.  He spoke to us about Aleck from shoulders to fingertips, something we’d really been missing in our Chicago doctors experience.  The next course of action awaiting us from our Chicago docs was a tricep release and lengthening that would remove most of the power from Aleck’s left arm and leave him using his right arm to bend his left.  As soon as they showed me what kind of functionality he’d have after that I knew this wasn’t our answer.  Anyone who’s seen Aleck knows how good he’s doing, how much he’s changing and growing every single day.  We used to try to keep track of every new move he’d make and it got to the point of ridiculous which was the best thing to discover.  Why would we want to render an arm practically useless?  Well, his elbows aren’t bending more on his own, and we’ve hit the wall with splints, but what about serial casting?  I’ve been asking this for a year now and finally I have my answers.

From shoulders to fingertips, here we go.  His shoulders are a mess, very contracted, very tight.  Kozin has seen all kinds of operations for this, none have worked, he’ll just learn to adapt and maybe down the road they’ll come up with something better.  Aleck’s elbows barely get to 90 degrees so we need to get more flexibility out of them.  Serial casting is a great way to do that without loosing too much power in the arms, especially since we can no longer splint to get the outcome we want.  Great, we’ve got a plan there.  Now, his wrists are not where they need to be and down the road we’ll be looking at some tendon surgery for his wrists and hands.  What?  No one has ever mentioned that to us before. Kozin illustrates how hard it is for Aleck to grab things with the position his wrists are in and how much more function he’ll get if we try to correct that.  He even had a good bedside manner.  The plan is to start serial casting very soon, two weeks of plaster casts followed by another two weeks of plaster casts on both arms followed by a month of night only casts.  We might include the wrists in that and then see him again next year to talk more about our options for hand surgery.

Craig and I figured if we were flying all the way out to Philly, how about a trip to Delaware (Hi, I’m in Delaware).  That’s where the biomedical engineer responsible for the WREX system, the home of the magic arms, the technology that’s been putting both Aleck’s condition, Arthrogryposis Multiplex Congenita, and 3D printing on the map. Google even picked up the video of that little girl hugging her mom for the first time for the New Year’s ad the year Aleck was born.  We certainly felt lucky that if we have to climb this mountain we were doing it as teams of people were working to help these kids out using the most cutting edge technology. With our Batsuit in hand we were escorted into a part of the Nemours hospital that was built in the 1940’s, original elevator and everything.  Tariq, the brains behind it all, played with a series of plastic pieces, metal bars, straps, and rubber bands, fitting Aleck with a sample WREX arm as we took videos of the difference in his range of motion with and without the WREX.  They simply loved Aleck’s Batsuit as well and we discussed how we could attach the WREX arms to a vest like Aleck’s, and other ways to rig the pulleys in the back to get him more leverage especially in his shoulders.  Truly, the WREX targets the shoulders and if we can get more flexibility in his elbows then the WREX will only be that much more effective.  We spoke about the future of the WREX, making it more portable, making it less noticeable, and continuing to grow as Aleck grows.  It won’t change how he functions when it’s not on, it’s not like a splint that will give him long lasting effects, but it’s a living device to help him further his quest towards an independent life.  Being able to feed himself, not just food on a fork, but holding a piece of pizza or maybe a hot dog.  Being able to brush his teeth, brush his hair, wash his face, clean his ears, pick his nose, put on a hat or sunglasses.  Don’t get me wrong, we truly and deeply understand how far Aleck has come, but what most people don’t understand is still how much is out of his reach and how incredibly frustrating that is for such a highly intelligent little man like our own.