Monday, August 20, 2012

Vacation's on life support

For most families, going on a trip is both taxing and exciting.  Packing is stressful, and it takes a day or two to get ready and make sure everything that might be needed is in the bag.  For most folks, forgetting to pack something is not a huge deal – just stop at any Wal-Mart, and you can pick up what you need.  That is not the case, though, for parents who have a child on life support machines.  When it comes to travel, even the most experienced of special needs parents can be thrown into a tizzy.   When you know your kid could die because you forgot to pack something, well, that ups the ante a bit.  Wal-Mart doesn’t carry backup breathing pacer antennas or ambu bags, so Mighty Z relies on me to make sure a backup of everything she might need is easily located in our luggage.

I start getting anxious about an impending family vacation about a month before we leave.  I write a list of what I need, and then I add to the list again and again in order to make sure I have all of my proverbial ‘ducks’ in a row.   This year, part of lining up my ducks included calls to both the cruise line and airlines we planned to travel on, as it is important to tell them that Mighty Z will be coming and all that she will becoming with.   Although some may think such phone calls unnecessary, it’s been my experience that making these calls seems to help our vacations go much smoother – it’s just easier when everyone is on the same page from the start of a trip.  

So, further toward getting everyone on the same page, my pre-travel prep also includes drafting a letter re: Mighty Z’s medical condition and needs (including a brief list of her machines, supplies, and medicine) for her doctor’s signature.   After the letter is drafted, I take Mighty Z in for a checkup just to make sure she is 100%, and of course so that my doctor can sign my letter.   After the letter is signed, I give it to the airlines and the cruise ship, etc., so that they are in the loop concerning what Mighty Z’s medical needs might be during her travel with their company.

With the above out of the way, I begin to imagine all that could go wrong if I am not there next to Mighty Z every minute of the vacation.  So, I start the hunt for her medical alert bracelet and determine it is MIA.   I order another online, and pay the extra $20.00 to rush it.  
Now the tricky part:  I need to somehow convince my insurance to give me Mighty Z’s supplies one week early – ugh!  Insurance no like-y paying for supplies early; rather, they like everything to be filled at the same time every month.   Some pleasant-voiced phone calls in which I explain numerous times why the supplies are needed early finally get the needed approval for early payment.  Hooray!  I feel like I won the lottery, and off to the pharmacy we go!

Last but not least, I do an inventory check make sure all Mighty Z’s machines are in tip-top shape.  Like the other tasks above, this too needs be done in plenty of time to ‘make it so’ in the event some of Mighty Z’s machinery doesn’t pass initial inspection.  

On the morning of vacation everyone knows not to talk to momma while I’m packing Mighty Z’s medical bag.  I have the packing of the machines into her medical bag down to a science.   Thankfully, gone are the days where I had to pack 2 ventilators, suction machine, and all trach, circuits, and suction catheters. Since Mighty Z had her Avery biomedical breathing pacers implanted, I can skate by on one bag to carry everything.  Sweet!

On the way to the airport, my anxiety mounts.  Did I pack it all?  Did I forget something?  I make my husband stop the car so I can do a quick look, and even though he obliges so I can do another inventory check, I still feel anxious and unconvinced that I have everything.   Unplanned stop notwithstanding, we get to the airport two hours early.  

We arrive at the airport with lots of time to spare simply because I know that it is going to take forever to go through airport security.   We have done this drill too many times to count, but its still pretty funny to watch Mighty Z “assume the position” without being asked – my bionic girl can really make those scanners sing!  After TSA goes through each bag and takes out each machine to wipe it down and make sure its not a bomb, we are cleared and admitted to the airport terminal.

Because of Mighty Z’s condition, we get to pre-board.  That works out pretty good, because its during this time that I get a chance to recheck Mighty Z’s medical bag to make sure once again I have everything and make sure that airport security didn’t inadvertently forget to put something back in her medical bag.   Happily, its all there, and we are cleared for takeoff both literally and figuratively. 

AHHH finally on the cruise and all Mighty Z’s machines, supplies, and medicine are here.  I feel like saying, “YAY!  Mr. Ambu bag we are together again at last.”   Now, where’s that flight attendant? Momma wants a nice wine-spritzer. 


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  1. I hear ya... we go through the same thing and we avoid plane travel as much as possible... however Josh does want to go on a cruise one day. But even with his pacers, we still pack the two ventilators, trach supplies, suction and all... plus an IPV machine for his twice a day breathing treatments. It's all nerve wracking, but well worth it, as I know you well know.

  2. "When you know your kid could die because you forgot to pack something, well, that ups the ante a bit."

    best line EVER!!! cracked me up!