It Gets Real

IMG_0851I’ve known about these impending leg surgeries in Florida since July.  Dr. Paley described them to us during our last visit.  It’s no surprise. But, what was surprising to me was how hard it hit after Drew’s recent follow-up with Dr. Paley on Monday.

Drew and Daddy flew to Florida the seventh time, thanks to Miracle Flights, on Sunday.  I did not attend this doctor appointment as to minimize expenses and it’s just a routine follow-up…same ol’ same ol’.  But the morning of the appointment, in anxious anticipation of waiting for Nathan’s phone call to relay the events of the day, I started to regret hanging back.  I sure didn’t regret skipping the stressful travel through two airports and tight quarters in planes while lugging around bags and strollers and kids though!

Their travels were safe and uneventful thankfully (and his braces didn’t break!!), something I tracked obsessively using this app on my phone to track planes.  When I first discovered the app I thought it was a little suspicious that just any person could track every plane in the air.  I mean, it seems flawed.  But, I certainly appreciated the access as a protective mother and wife. But, none-the-less, I tracked their plane as it took off and sent texts to Nathan’s turned-off-phone of interesting updates of their flight travel.  I even watched them land.

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The appointment went as expected.  Drew had his routine round of x-rays and as usual Dr. Paley and his medical team evaluated Drew.  Of course, the hot topic were the upcoming surgeries where we got lots of helpful information that will be critical in determining the logistics of this summer’s trip to Florida.

The surgeries are being planned to correct the regression of lack of extension in Drew’s legs as well as shorten one leg as he does have a lengthening discrepancy on his left.  Immediately after the first major round of corrective surgeries, Drew had straight-straight legs.  And, over time, Drew gradually lost that extension.  There was one period of time in which he went way too long without braces while we waited for the orthotics team to build new braces which, I’m sure, had something to do with the regression as after that long month, we were suddenly unable to completely straighten Drew’s legs without pain or discomfort. But, I’m sure that natural regression account for most of it.  Dr. Paley did say that he may lose extension over a period of time requiring additional correction.

Surgery One will take place May 17th.  While I can’t remember which leg will be surgically corrected first, a metal rod will be surgically placed into Drew’s leg in the maximum extended position.  Then, two weeks later, the other leg will receive the same treatment.  He will be required to have these rods in his legs for six more weeks at which point, during the third surgery, they’ll be removed.  Then, we’ll be required to stay in Florida for 6-8 weeks for intensive physical therapy.  Oh, starting with surgery one and the following eight weeks until surgery three, Drew will be non-weight baring.

This isn’t too terribly different that what was described to us initially (well, the 6-8 week stay post-surgery was kind of a surprise.)  I haven’t really had strong feelings about it. But, now that we’ve had this final follow-up before this plan of action is to take place, now it feels so real.  Like, it’s official.  It’s going to happen.  And, that ball of anxiety forms in the pit of my stomach.  The cost to get to Florida.  How many round trips are we going to have to make?  Where are we going to stay? Should we fly?  Should we drive?  What’s going to be the easiest? Cheapest?

Naturally, because I’m a virgo (worrier/over-analyzer), my mind immediately goes into overdrive and obsessive thoughts of challenges and obstacles.  No walking.  Need his wheelchair with us.  Missing school.  Is Nathan going to miss a lot of work?

Unfortunately for us, the Ronald McDonald House equivalent on the medical campus is booked.  I can’t help but annoyingly roll my eyes.  It is IMPOSSIBLE to get in there.  Seven trips to Florida and we have yet to get in once, even having called nine months in advance.  I just completely give up on ever considering that one an option.  I don’t care how many more times we go to Florida, I’m not even going to attempt to apply there anymore. Hotel rates, even at the hospital discounted rate, is over $100/night.  Well, just mark that right off as an option.  Not feasible with a 6-8 week stay.  The next financially equal solution is an actual Ronald McDonald House in Ft. Lauderdale which, according to Google, is a 1 hour 4 minute drive.  But, it IS only $20/night and that’s a lot more reasonable, regardless of the gas it would take to get to West Palm each day.

I was toying with determining how to get to Florida.  Of course, the luxury of just hopping aboard a plane and getting there in ten hours or less is very alluring when considering the 13-15 hour drive across 1,018 miles of the United States with an eight- and two-year old.  But, the cost will be astronomical since our plan is to make two round trips (one two-week stay for surgeries #1 and #2, return home for six weeks, then return for surgery #3 and stay for eight weeks.)  Plus we’d have to have a rental car and for 10 total weeks of rental car fees, even  Warren Buffett would get sticker shock.

But, then it occurs to me that Drew will be unable to walk so he’ll need a wheelchair and so as to not completely render him helpless, I would prefer he’d have his power wheelchair so he could at least be in charge even in some small way.  It weighs 311 pounds so not sure we could transport it via plane.  So, driving it is.  Hopefully I can talk Nathan into breaking the trip, which we could make in two days, into three days for the sake of the kids’ sanity which will, in turn, maintain mine.  I mean, can you imagine strapping a two-year old into a car seat for eight hours, regardless of how you break it up in a day?!? I mean, come on.  Ludicrous!  I have anxiety and doubts that even six hours over three days will be humane.

I whip out my calendar and count out the weeks and determine Drew will be missing the first 2.5 to 4.5 weeks of the start of the new school year.  I bounced around a few ideas, but I thought of something really cool and have reached out to the appropriate parties to inquire about this innovative solution.  But, I want to keep it a secret for now and hopefully I’ll be able to share an epic update.

Also, Drew will be having his first surgery of 2016 this coming Monday in Nashville, TN.  At the request of Dr. Paley, he’s having a port surgically placed.  This will allow the Florida surgical team to easily gain IV access which is otherwise cumbersome and invasive with Drew’s short arms.  In order to avoid potential delays during surgery caused by frequent failed attempts, a port can be used for anesthesia.  Please keep Drew in your thoughts and prayers, positive vibes, good luck, whatever it is you’re into as Drew undergoes this surgery.

So, after considering these few obvious factors, the dollars just kept adding up in my head so I was hallucinating hearing  a never-ending ear-piercing “cha-ching!” for the remainder of the  night.  And, that’s when my anxiety really started to grow.  Unfortunately, my casual fundraising has been kind of underwhelming.  So, if you could please consider donating to Drew, we’d be unspeakably grateful.  No matter how hard I tried, I could never sufficiently express the magnitude of how Drew’s inability to walk hinders even the most routine of things.  Walking is such a non-issue for the average person.  It’s a basic human right and you can’t imagine how every aspect of mundane life is affected when you can’t walk.  And, his issues are even compounded with the fact he has short arms.  Without walking, Drew has

Click for a larger image
Click for a larger image

to be carried into the bathroom and placed upon the toilet.  He can’t fix himself something to eat.  He can’t climb into or out of bed.  He can’t retrieve a toy.  He’d be excluded from many, many activities.  But, most of these things are now possible thanks to Dr. Paley.  But, this is an extreme financial burden on us as Drew’s correction continues.  We’d appreciate any support you can share with us.  If you have some spare change, we’d appreciate it.  If you could share my blog, my Drew Walking Tall page and my GoFundMe campaign to your followers on social media, we’d greatly appreciate it.  And, don’t forget to join my online t-shirt auction to purchase a Drew Walking Tall t-shirt.

2 Comments Add yours

  1. Glennesse Ohagan says:

    where in west palm is he having his surgery?

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