Sunday, July 10, 2016

Heading South for the Summer

Last time on our blog, we went into a little bit of detail about how Nate's body turned into a sadness pinata that burst open with erratic oxygen numbers, loss of his arm strength, the ever-threatening ulcerative colitis, as well as my two kidney infections.  

It's easy, when everything seems to be blowing up in your face, to feel like the world is horrible and and life is nothing more than a shell game with none of the shells actually containing a ball. But recently, we took a trip to San Diego.  

It helped me feel better and here's why. 

I think one of the things that truly marks you as a father is when you take your family on a yearly family vacation.  That, and getting out of bed one last time to make sure the front door is indeed locked. It always is.

But what was so wonderful about this vacation was that it could happen at all.  

Nate is literally on a 24 hour-a-day life support machine.  His ventilator batteries run out and his life is on a timer.  For survival and safety Nate's daily requirements are as follows:
  • a suction machine
  • a ventilator
  • suction tubing
  • suction catheters 
  • gauze
  • vent tubing
  • emergency bag with trachs, g-tubes, ambu bag and trach ties
  • humidifier
  • suction canister and tubing
  • pulse ox (oxygen monitoring machine)
  • pulse ox cords
  • g-tube extension
  • syringes
  • liquid food
  • cough assist machine and extra tubing
This is just a partial list of what he needs to have while sitting quietly at home  When we take him on vacation, we have to bring a week's worth of those supplies plus redundancies, along with the normal things he would need like any other child.  Not to mention a ridiculously expensive accessible van and his wheelchair.

Here's my point; despite all of this, we were able to drive 8 hours south in a day and live out of a hotel for a week.

As horrible as things can get some times, this is a genuine miracle.  Nate losing his arm strength was a major blow but it didn't stop us from visiting an aircraft carrier and sitting in a REAL JET COCKPIT. Don't believe me?


You think Nate needs arm strength when he's got some Hellfire missiles at the touch of a button? (I have no idea if this plane had Hellfire missiles but Nate now thinks it does.)

Here's Nate about to slingshot off a carrier.  Everyone else had their kids kneel in front of the mannequin and mimic his pose, pretending to give jets the "go ahead" for take off.  Not Nate.  He was the JET getting the go ahead for take off.

We later ended up at the San Diego zoo. The San Diego Zoo was built in 1916 with the sole purpose of testing the resolve of anyone pushing a wheelchair.  It's the only reason I can think of that it was built on over 13 steep hills.

Here Nate is with the panda from the zoo. He thought it was hilarious that the panda just wanted to show everyone his bottom. Nate finds humor in just about everything and it's great.

As exciting as the zoo and the Midway carrier were, nothing beats his pure delight over the "transformer couch" at his Great-Grandma Lowe's house. When we visit there, she has a couch that pulls out to a bed.  Nate delights in "tricking" me.  He tells me that there is a bed in the room.  I guffaw, and respond by saying, "How could there be a bed in there, I only see a couch".

That's when Nate shouts, "and now...THE PRESTIGE!" and has me pull out the bed. I am thoroughly amazed and he is delighted. He loved the bed so much that he had me take a picture of him on the couch with his "class".   

Another activity Nathaniel was fond of in San Diego was sitting at the pier and watching...I don't know, the water?  Whatever he was watching he loved it down there.

And then there was Sea World.  Nate loved Sea World.  This was the kid that was "meh" on Disneyland but Sea World is his jam.  He's fascinated with sea life and getting to see orcas and dolphins in person was something special for him.  So much so that every morning after Sea World he begged us to go back there. We made the mistake of doing Sea World on the first day.

The animal shows were pretty boring for the most part.  Gone are the days of animals flipping and twisting through the air.  Now they mostly swim around splashing the first few rows while the trainers stand outside the tank in wet suits talking about the animal's names.

It's also very hot at Sea World. Not because it needs to be but because they hate shade there.  My theory is that since the only trick the animals can do now is splash people, Sea World needs to make sure the audience is so hot and dehydrated that being splashed goes from being annoying to something they desperately crave.

I mean, they're basically just getting a shower in their clothes while in public.  Do you know ANYONE that would want to do that if it weren't an absolute necessity for their survival?

But Nate loved it so...okay. The whole point of this is that we were able to have a great vacation in a far away city with a child on a life support machine. It's pretty amazing and while it doesn't make the bad things better it reminds us of how much is still possible.

I know pictures are not as fun as video but we didn't take any video on our vacation. So instead I'll leave you with this old video of Nate we stumbled on from when he was about 3.  Apparently he used to be afraid of garbage trucks.  Something I had forgotten until I saw this.


  1. That boy has a movie-star smile!

  2. Love the post! Yay, family vacations! Yay, technology that makes them possible!

  3. I honestly feel the same way about the Oakland zoo, only sans the wheelchair (WHY all the hills and the hotness?). Also. Nate makes my heart want to burst. Wide open. And laugh and cry. You guys are the BEST.

  4. Nate! I ran to your grandma's house, stayed there for 3 minutes and ran back to my house. When I got back you had disappeared. I think that was another prestige! Thanks for coming to my house and teaching me PokeMon