Our Life is a Circus

It feels that way sometimes.

Case in point:  We are in the preparation stages of our sixth follow-up with Dr. Paley.  Even though Drew has completed the series of corrective surgeries for a couple of years now, Dr. Paley still follows his progress and evaluates his condition every three to six months.  Follow-up appointments typically include an x-ray and a short discussion with Dr. Paley in the clinic.  It’s hard to believe that we fly across country for just a simple clinic visit, but we’ve accepted this as our norm.

Except this clinic visit will be slightly different.  In addition to the standard-procedure x-rays, Drew is going to be evaluated for a potential surgery.  He has been having some discomfort when his ankle is touched and it is theorized that the internal fixator is moving upwards where less tissue exists thus pain when squeezed in that area (basically, we’re pressing the skin and tissue into the hardware which would be painful for anybody).  So, they’ll determine during the appointment whether or not to go ahead and remove the internal fixator.

We are not ones that can afford so much travel so luckily Miracle Flights has once again booked us a round-trip ticket for our visit.  We encountered an issue at first: Holden, having just turned two, now exceeds the age limit for accompaniment and won’t qualify for a ticket through Miracle Flights.  This will be our sixth Miracle Flight so I in no way, shape or form  hold any contempt towards them regarding this policy, but I was distraught at first trying to come up with a plan to bring Holden.

Unfortunately, Holden is working through some sensory and feeding issues (because god forbid anything in our life be routine) rendering him incapable of being separated from me for any lengthy period of time (he is still reluctantly nursed and yes, I realize he’s two and this was not my plan, but I’m just trying to keep him alive, so no judgement please.)  If Holden doesn’t go, I don’t go and it would kill me to not be with Drew if he were to have surgery. *biting lip*

Luckily, my plan B worked out and we have financial support for Holden’s own ticket.  So, after I received our flight information, I went online to purchase Holden’s ticket only to find that the final leg of the trip is nowhere to be found on any online-booking website, not even on the airline’s direct website. *Toe tapping* Unfortunately, we are unable to change flights on our already-booked itinerary.  *Start chewing fingernails* I contact the airline directly only to be told by an automated system: “Due to high call volume, we are unable to assist you today” followed by immediate disconnect….not even an option to hold for an available representative. *Blood pressure increasing* I contact Miracle Flights and beg for mercy.  And, even though I thought their miracle work had been completed, somehow they were able go above and beyond and finally managed to reach an airline representative who completed the transaction ensuring that Holden will be able to travel with us on each flight. *Virtual high-five to Miracle Flights* *collapse on couch to recover anxiety attack*

So, in short, after two minor heart attacks, Holden gets to travel with us to Florida.

Flights handled.  Room booked.  Rental car rented.  I feel like a super hero.

But, it is with great anxiety that we await this appointment.  Even though Drew has had more than a dozen surgeries, anytime he goes under the knife there is a level of anxiety.  And, don’t forget we’ll be asking about Drew’s leg-length discrepancy to determine how detrimental it will be to Drew’s development.

We are also planning on pursuing solutions for Drew’s arms, if you recall from my last post.  We’ll be asking Dr. Paley about his opinion on limb lengthening opportunities as well as or at least correcting Drew’s immobile thumbs.  But first, we are going to see an upper-extremity doctor at Kosair in Louisville, which I’ve heard has a state-of-the-art arm lengthening program.  We are going to compare our the opportunities shared at each location and determine from there which would be the best solution for Drew.  We will always trust Dr. Paley with Drew’s legs considering we were rejected by four specialists in four different states before finding Dr. Paley, but I have to admit, it would be nice to avoid the cross-country travel.

Also this week we received a letter from the hospital network in Florida that almost stopped my heart.  It used words and phrases such as “currently in negotiations with your insurance carrier” and “if no agreements are made, services provided by our physicians will be out-of-network”.  I can’t even begin to think about this situation without needing a bottle of Xanax within arm’s reach.  So, I’m just going to pretend I didn’t receive the letter and rock back and forth mumbling that “everything will be ok.”

 

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