Friday, August 16, 2013

Of course...

Only 4 days until we fly across the country for Carter's Make a Wish trip!  The excitement in our house is tangible when you walk through the front door!  Suitcases are filling up and the only topic of conversation is San Diego.  If I could box it all up and keep these moments and memories in a shadow box or live video, I would.  I envy those families on TLC who have their own reality shows and can watch their big days over and over again whenever they want.  I wish that we could hire someone to video this entire trip.  I want to bottle it up and keep it forever.  I know I have already written about my fears and long list of "to do's" before we go, but I find myself overcoming my previous fears and developing new ones.  I worry about the little details that are still unknown.  Will Lily sleep in the hotel room with all of us sleeping inches away...she is the lightest sleeper I've ever seen and I thought I had that record!  Should I take Carter's wheelchair or just a double stroller?  Will I be a ball of nerves the entire trip that I want so badly to just enjoy?!  I know that all of these things will work out one way or another, whether I plan every single detail or just wing it.  I know that.  I just want so badly for every thing to be perfect.  This is a trip of a lifetime, right?!  How many more times in Carter's life will we be able to do a trip to this magnitude?  This isn't a luxury we have when deciding on going on a family vacation.  Not just financially, but because the idea of flying and deciding on all these things by ourselves would be too much.  If Make a Wish wasn't helping us with the planning and ADA details, I don't think we would be able to brave it alone.  We aren't taking this trip for granted for an instant.
To top it off, Carter isn't doing all that well this week.  He is refusing food and crying in pain.  He only took 8 ounces of formula today and I had to vent/empty the other tube feed because he was miserable.  This evening, he is refluxing even though he has no food in his stomach.  He went almost a week without a bowel movement so I have pushed miralax and milk of magnesia to very little avail.  In a desperate attempt to make sure he is okay, I have decided to take him to the emergency room tomorrow.  This way we can do a total work up to make sure he is okay.  I may be over worried, but this time, I don't care.  My mommy gut tells me that something is bothering him and I won't be able to relax and breath until doctors assure me that he is okay.  Out of all of my fears and unease, my biggest one is that Carter will be miserable or painful the entire trip.  This trip is for HIM!  I am terrified that something will go wrong, that we will end up in an ER in San Diego.  This trip is meant for getting away, leaving behind the medical struggles for 5 days; to just live.  When I stop and look at my reasoning, I could kick myself.  How can we leave behind all the medical mumbo jumbo?  That is impossible, no matter how hard we try.
My entire day was spent cleaning the house...mostly shampooing the living room carpet.  Carpet that has to be steam cleaned every other week to eliminate the medical smells.  I think the smell of Carter's Mito cocktail is permanently a smell everywhere I go; my van, the carpet, Carter's bedroom, my kitchen.  I'm sure most all Mito parents understand what I am talking about.  Once I finished shampooing the carpet, I began packing a suitcase with formula, G-tube extensions, bolus syringes, blue pads, diapers, extra G-tube button, and med syringes.  Then I went over in my mind 10 times, what things I will need in my carry on bag for the 5 hour flight.  While on our trip, every day will be filled with medical mumbo jumbo.  It is there, it is Carter's life line.  There is no running away from it.  I am okay with it, I really am.  I am just scared out of my mind that Carter won't have fun.  I am desperate to make sure he does.  I am in panic mode with only 4 days until we leave.
Maybe it is in my sleep deprived state of mind, but I could cry tonight.  If Make a Wish only had a magic fairy that could grant any wish in the universe, it would be that Carter could live pain free.  Just when things are going so perfect and Carter is thriving, progressing and doing so great...his GI function just won't get on board.  When I have asked his GI doctor what more we can do, she always tells me that we are doing everything we can and that this is going to be a battle throughout his life.  I just can't accept that.  Carter suffers from GI dysfunction every single day of his life.  Out of his 12-14 medications he gets a day, 6 of them are stomach/GI meds.  I have laid in bed, wide awake for hours for the past 2 weeks just going through all the things I wish I could control.  I lay awake in a tizzy; worried over so many things.  The light at the end of the tunnel right now, is San Diego.  I feel like it's so far away, yet so close.
I will do whatever it takes to make sure Carter has the time of his life.  I will sit in the ER all weekend, get no sleep and drive myself crazy just to make sure this happens.  Fight I will; yesterday, today, tomorrow and forever.

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