Road Trip Countdown: 3300 Miles to Go

Well, another road trip, another doctor down, 3300 miles to go.  Just settled into the house after a loooooooooong day.  I haven’t even gotten the energy to unload the car and it sits in the driveway with three days of empty coke bottles, thrown about toys, loose diapers and random knick-knacks tossed about. Sigh…it’ll have to wait until tomorrow.

So, let’s recap the last three days.  And, though I’ve explained this and explained it again to close family members and am quite tired of the repitition, I’ll do my best to eloquently inform you of our fruitful trip to Shriners.  It’s also fairly difficult to recall all of the events in the order in which they actually occurred…it’s only been two days but I feel like a week’s worth of activities transpired already!

Bellboy

We stayed at the Springhill Suites by Marriott in Brentwood which resides in the same parking lot as a great restaurant that Nathan and I happened upon during our last trip to St. Louis, Houlihan’s.  I was sure to immediately text Nathan to brag. And, in case I didn’t make it clear before, Nathan was on the boat this week so it was just me and Drew in St. Louis this time.  The hotel was nice.  I did attempt to go to the City Museum after checking in, but there was a parade marching through downtown St. Louis and I just couldn’t find my way around so I threw in the towel and went back to the hotel and we swam in the pool.  Actually, it was more like a huge bathtub more so than a pool…dang marketing gurus who use creative photographic angles to make a pool look larger in brochures!

Monday started early at 6:00 am!  If any of you  know me, you know that I don’t typically wake up that early…even CLOSE to

that early.  We made it to the hospital way early for our appointment which was at 7:30.   Luckily, it being a hotspot for children, Drew had a lot to occupy his time while we waited to be called back.

If there is a train. Drew will find it.

We began by taking dozens of x-rays.  X-rays of his legs and arms, both forward-facing and on the side, his hips and his spine.  Drew was not enthused.

I was worried by starting out with such an experience because I knew we had a long day ahead of us, but turns out I was wrong.  Our next stop was a hospital photographer to take photos for his medical record.  It was reminiscent of a modeling shoot.  She’d request certain positions and Drew, being the ham that he is, was eating the attention up! 

Work it!

 Then we saw a group of occupational therapists which you will never hear Drew complain about; they always have the best toys! At first Drew was just delighted

Occupational Therapy looks a lot like play with toys.

to see all of the toys and he just went from closet to closet and drawer to drawer picking out stuff.  It wasn’t like at home as his therapists brought a small book bag of toys, Drew had hit the jackpot!  Naturally, they were very impressed with his abilities.  Then he saw physical therapists which I expected to go a lot worse than it actually did.  Drew tends to be stubborn in that area disliking all of the tugging and stretching and I especially didn’t expect Drew to tolerate them having to measure every little inch and angle so well, but maybe Drew was empathetic to the fact that I was exhausting myself getting prepared for this trip and had such high hopes.  Or maybe it was the fact that he had gummy bears for breakfast.  I dunno.

Luckily they gave me a wagon to cart around everything as we bounced around the entire campus all day!

 It’s a little misleading describing all of Monday’s events in one eight-sentence paragraph because we were at the hospital for a total of 7.5 hours!  The purpose of this day was for therapists to visit with Drew and analyze what Drew currently does and how he works to help the doctors gain a better understanding of Drew’s life.  After the hospital, we visited downtown St. Louis with the intentions of taking a helicopter tour around the riverfront, but lucky for me, Drew changed his mind and wanted to ride a horse.  Yay!

Headin' down the hallway....looking for adventure!

Tuesday began early as well, though I learned Monday how truly close the Shriners was so I took advantage of an extra 30 minutes of sleep.  We started off by seeing an upper extremity doctor who evaluated Drew’s notes from the day before.  We spoke in length about Drew’s thumbs and the fact that they are tucked so neatly into his palm.  It was stressed that this thumb would need to be fixed which would give him the opposable appendage to grasp objects and would resolve some of the concerns about surgically removing the rotation in his legs that allow him to use his foot as the opposable appendage.  Perhaps if he had use of his thumb he wouldn’t use his thumbs as much therefore would require less rotation in his legs.  He also spoke briefly about lengthening his right arm with the prediction that Drew would need some way to stop himself from face-planting into the floor should he fall if he were to ever have his legs repaired. 

Then came the lower extremity doctor who, like pretty much every orthopaedic doctor we’ve spoken to, is no doubt an expert in his field as I struggled keeping

In between appointments, we got to enjoy some downtime in the Shriner's Recreational Therapy room.

up with his medical explanation.  But, I did understand that his suggestion is to put some type of screw and plate doo-hickey into each knee surrounding the growth plate which would, over many years, some how tell his growth  plate to grow more on one side and slower on the other side ultimately resulting in the ability to flex his knee in bigger angles all the while maintaining his ever-valuable rotation that allows him to use his feet as hands.  So, I did learn that Drew has external (facing outward) rotation in his hips so his upper legs face the same direction, naturally, as our legs do when we sit indian-style and then Drew’s lower legs have internal (inward facing) rotation so his tibia (shin bone) face each other.  When he bends his knee it bends towards his face and back down again.  Ours, our knee faces upwards and bends down to our butts.  So this screw-plate-thinga-mabopper would give him greater flexion.  He will still have the rotated legs (for now) and while he may just figure out how to stand and walk with the newly straightened knees, we shouldn’t count on it as it’s not the purpose.  The name of the game right now is: flexion. 

So, what are our next steps?  We are working to confirm if the Children’s Hospital accepts our KY Medicaid.  If the surgery is done in St. Louis, it would have to be done at the Children’s Hospital because of Drew’s heart defects; Shriners doesn’t have a cardiology staff.  The same doctors from Shriners would do the surgery at the Children’s Hospital and then PT and OT would happen at Shriners.  Or, we could have the surgery done at Vanderbilt should St. Louis not accept Medicaid.  Vanderbilt does accept our Medicaid so no out-of-pocket expenses is a plus for us!  Then, recovery and PT/OT would happen at Shriner’s.  So, right now, we just need to figure out which hospital.

Climbing at the City Museum
Cheese!

All in all, it was a well-worth-it trip.  Although I’ve always been very happy with the care that Drew has received at Vanderbilt and other hospitals that he’s visited, Shriner’s was outstanding.  Typically, when we see a doctor any other place, we see the doctor him or herself for 15-20 minutes and call it a day.  At Shriners, we saw a staff of at least eight therapists who all watched and interacted with Drew to analyze his abilities, make notes and provide first-hand experience and knowledge to the doctors so it was a collaborative team effort which was comforting knowing that all different perspectives, experiences and opinions were shared and evaluated.  Every person we saw, and there were more than 15 people who came in and talked to us specifically about Drew and our purpose, knew our name before we introduced ourselves and had memorized Drew’s medical records.  I didn’t once have to explain to them about any of Drew’s conditions or medical interventions – they already knew about them.  And, much to my delight, I saw at least a half-dozen other young kids with arm and leg abnormalities which was comforting seeing, first hand, the experience these doctors have gained in this field and seeing and repairing these types of occurrences isn’t strange, new or uncommon to them. 

In closing, be sure to check out the Journal for all of our St. Louis photos!

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