This Trip, So Far...

We're in South Carolina for the Christmas holiday.

The trip so far is off to a rough start.

The ride here was one of the most trying we've had. Jimmy was tired, weak and also needed to be suctioned a lot. That requires stopping to find a power outlet.

At one gas station, we tried like about 6 different outlets and couldn't get our equipment to work. I panicked and called our respiratory supply guy in Georgia to have him start the process of overnighting a new one to the SC.

Believe me when I tell you this machine is the most valuable piece of equipment we have when it comes to Jimmy's medical well-being.

Even more so than the ventilator.

When the nurses are rough with the bag this thing travels in I want to punch them in the face. I realize that's frowned upon.

After taking everything out of the damn vehicle myself (we have to travel with entire car full of supplies) to get to our back-up extension cord, I realized our metal portable ramp fell against the van only to put a gross gash in our shiny black paint job.

Our back-up, manual method of suctioning is pretty worthless but I had the nurse working on that with Jimmy while we were trying to figure out the other thing.

As Jimmy was coughing and gagging, we ran frantically around trying to be sure it was our equipment that was failing and not their outlets.

We tried a half a dozen outlets in the service garage portion of this gas station. Surely, that meant it was us not them, RIGHT?

Then, I ran inside the convenience store and tried an outlet in there.

It freaking worked.


We got Jimmy out of the car and had him wheel into this mini-mart to a working outlet. The guy behind the counter had the nerve to tell us Jimmy was blocking an aisle.

Oh, we're just trying to clean out my husband's lungs, you know, TO KEEP HIM ALIVE.

God forbid us block anyone from getting their Monster energy drink and cajun boiled peanuts.

Back in the car we go. After a long day traveling, stopping, going another five miles and then having to stop again -- we made it just as the sun was setting.

We decided to get a smaller room hotel this time to save money which means the nurses are really up close and personal and all up in our business.

Because of my pure exhaustion last night and the language barrier factor with our two nurses, I couldn't understand something they were trying to tell me and got really upset and yelled a whole lot. That in turn, made Jimmy upset. It wasn't pretty.

It's always hard bringing two nurses with us on vacation. Medically, they save my butt (let the record show I acknowledge this). Emotionally, it's friggin' hell.

I want them to go away. Because of the professional relationship I wish to keep with them, they are very much strangers in our private space meeting our closest family and friends. They get to see me with my guard slightly let down. I don't like it one bit. It feels very personal.

I'm clearly still working on the acceptance with this part of our life.

Jimmy has been really, really tired lately. Like to the point of me saying something to him and him being too tired to respond with actual words.

He's it for me. He's what gets me through. And, when he's not feeling like himself, it's extremely difficult for me. Especially if I'm weak and mentally drained. When at least one of us isn't on our A game -- it's trouble town.

Jimmy's fatigue is an ongoing battle. We have been working hard to get to the bottom of it -- take this, not this, sleep on the vent, sleep off the vent, take a nap during the day, don't sleep too much -- it sucks.

Because of all the shock from the crash, it's near impossible to pinpoint what it is. We know his metabolic system is off. He's got too much growth hormone but not enough testosterone. His blood glucose levels are high but his weight is down.

It's hard not to get heartbroken (again) when my husband, with his big brown eyes, looks and says, "I'm tired of being tired."

Yeah. Really tough.

So, here's hoping to a good night's sleep and just a little more energy for his tomorrow.

Here's hoping taking in the goodness of being with family continues to sooth the soul.

Oh, and of course (while we're banking on hope) for a smooth ride home after Christmas.

Thank youuuuu.


  1. Tough times! Wish there were something I could do to help! Glad y'all made it safely! And hope y'all find sometime to relax and hopefully get some rest!

  2. I hate it was a tough start to your trip. I hope it turns around quickly and you enjoy your Christmas in SC!!

  3. Just know...I understand a lot of what you are talking about. Whenever we travel with Dakota it is out of control how packed our car is...seriously...sometimes you wonder if it is really all worth it...but in the end it most definitely is! Our suction too is our most valuable and prized posession. Does yours not hold a charge very long??? I understand the nursing thing as well. After Dakota's accident we had night nurses every night that drove us CRAZY but yet we needed them. It is so so hard but yet they are so helpful at times when you need them most. We have never taken them on vacation with us so I can't imagine what that is like. I hope you had a very Merry Christmas. Lots of love and prayers sent your way!!


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