In anticipation of a trip, I make a very detailed packing list ahead of time and try to anticipate every possible scenario that might crop up because if we forget something like prescribed food, medication, medical equipment, or medical supplies, we won't be able to just go to a Walmart and pick it up. I've found even finding something like small adult sized diapers impossible on grocery or drug store shelves.
So this past Christmas we had decided a few months before to road trip up to Montana. However, Austin had a last minute 5 day hospital stay for aspiration pneumonia which threw a new kink into our travel plans. He was discharged while still needing a low dose of continuous oxygen (we prefer to wean at home since it can take a while), and we were not able to get him weaned before the trip.
He was also put on unchartered doses of Miralax for some pretty serious constipation they had found while admitted. The Miralax was definitely working at the time of discharge, but we had yet to settle on the "best" dosage - that nice balance of soft enough to exit and stay contained and liquid explosions up the back and down the legs.
So now we would be traveling with enough large oxygen tanks for the driving portions as well as the large concentrator for our overnight stays. I would also need to be on high alert for liquid explosions while en route. I should also mention we decided to all go in the truck using the special needs car seat instead of taking two vehicles (which would include the wheelchair van).
On the trip up, it all seemed to go to plan. Besides the fact that we all had to travel a bit lighter to make room in the truck for 4 large oxygen tanks, 2 small tanks, and the home concentrator, the oxygen ended up being fairly easy to manage. He went through about 1 and a half of the large tanks on our way up to Montana. I was able to check and switch the regulator at lunch or at fueling stops.
On the other front, I had decided to back off the Miralax dosage quite a bit to hopefully avoid major blowouts while traveling. I assumed once we got to Montana, I could increase if needed.
Well apparently, two straight 9 hour days of sitting in the truck made the lower dose of Miralax not very effective. There were little to no results along the way. So upon arriving to Montana, in order to get things going again, I began giving him higher doses that were closer to what he was on at the time of his discharge.
Lucky for me, it was husband who discovered a few days after our arrival that it was now working quite well when he went to pick him up to carry him to our room to get him ready for bed.
Unfortunately for me, they left a trail of "hershey squirts" all the way down the hall (thank goodness for finished wood floors and tile!)
At this point, we were in high energy, intense clean up and diaper change mode. "Get the gloves and diaper wipes, stat!"
Well Austin can be a wiggler and has little control of his CP arms especially if you try to give directions like "keep your arms up by your head!" or "we don't need your help!" Instead, for some reason his brain interprets these commands as "reach down and see if you can put your hand in your diaper!" and "grin and laugh like this is the most fun game ever!"
So yeah. Intense. And it takes all four of our arms and 2-4 elbows to wrestle this 9 year old kid clean. It's a lesson in teamwork for sure.
We immediately realized that pulling his shirt over his head that is covered with explosive diarrhea was going to be a clean up disaster. So we surgically removed the shirt with scissors and tossed it in the trash along with what seemed like half a tub of used baby wipes plus the monster adult sized diaper still containing what was left of...well, you know.
After husband finished all the rest of the normal bedtime chores, and I had begun to soak, wash, and disinfect all the chucks and blankets that had poop shrapnel on them, Austin seemed no worse for the wear as he was in bed, clean, dry, and covered in warm blankets being fed, listening to bedtime lullabies, and drifting off to sleep.
Husband and I on the other hand ended up like zombies for at least another hour watching TV in the living room while recovering from what can only be described as a bout of PTED (post traumatic explosive diaper).
----------------------
During the two day trip up to Montana as well as on the two day trip home, we stopped at a Culver's four times for lunch. We were magically able to hit the SAME two Culver's on the way up as on the way home.
At the more southern Culver's location, we set up shop outside in their patio area because the weather was still mild. We put Austin's little cot between two tables and basically had the outdoor space to ourselves. He had his little portable oxygen tanks, watched video on his iPad, and the boys all huddled around to give him privacy while I changed his diaper as quick as I could before we left.
However, Utah was so cold we had no choice but to try to find a place indoors. On the first stop at this Culver's on the way up, husband went inside to recon the situation. One minute later, he waved the boys in to save the space he found, then he came back out to help carry Austin while I schlepped the rest of the gear into the restaurant.
The spot he found was perfect.
Apparently Culver's has some tables that have long benched seating on one side, and it was late enough in the day that no one happened to be sitting at any of those tables. We were able to throw chuck's and blankets down on the bench and lay Austin on his side with his back up against it. It felt very safe and out of view of everyone for the most part. It was easier and less stressful than I expected.
On the way home, a Sunday, we stopped at this same Culver's in Utah like we had before. Being a very popular place for church folk, the place was more crowded and filling up. But lucky for us, there were two empty tables in front of the long benched area.
Husband did the same recon to find the tables as before and waved the boys inside to save them while he came back out to help me with Austin.
But when we arrived inside, we found the boys just standing in the aisle next to the tables acting like they were unsure of what to do.
Well, lo and behold, the third table had one lone lady that we would have to squeeze past with Austin and All The Stuff. They weren't sure if we still wanted to occupy a space so close to someone else.
I wasn't sure either so I hem-hawed in my path too. We hesitated and whispered looking around and glancing furtively at the lady, but there weren't any other options.
Finally my exasperated husband needed to set Austin down as Austin is heavy and awkward to hold for too long, and we were blocking the aisle for others to get to their tables as well.
So he turned to the rest of us and hissed in his most glaring whisper, "Everyone, just act normal!"
It was the funniest thing to hear since we are obviously not a normal family, but it got us out of our bubble of indecision and back into action. We began to squeeze in and set up shop.
As for the lady at the third table, she acknowledged our plight and immediately commented she was about to leave even though we insisted she should stay. But if I had been her, I'd probably want to get away from a family of crazy people too!
----------------------
On the second day of the trip home, we got up early and the boys started taking things down to the truck as we packed them. I usually stayed in the room with Austin until the very last minute because he is "loaded" last.
It was really cold out. The parking lot still had some snow. There was also some ice and snow on the truck.
Husband came to get Austin, and I grabbed the last of the things in the room including the chuck he was lying on as well as his oxygen, iPad, food pump, and suction machine.
Usually husband does the heavy lifting and struggle of getting Austin up into the truck and into his car seat before returning to supervise the boys as they finish tetrising the luggage. I do the fine tuning of adjusting Austin's position, adding seat belts and his neck support, bib, and blanket. I make sure his suction machine is accessible, connect his food pump, start up his videos, and for this trip connect and turn on his oxygen from one of the big tanks.
As part of connecting his oxygen, I opened the valve to allow the oxygen to flow. However, the regulator showed it was nearing empty so I decided I should switch tanks which involved rearranging the tanks under the seat.
To get to the tanks, I removed a neon green-lidded plastic container of Austin's inhalers and essential supplies and set it behind the window on top of the covered truck bed. This container has traveled with Austin everywhere since he was born: trips, hospitals, I even had a friend get a key to our house and send it with family last summer when I forgot it at home.
The container was given to me by one of my best friends and had been my security blanket with Austin ever since.
I was rushing as best I could because it was still really cold out, and husband had the truck running and ready to go. Everyone was set and waiting on me so as soon as I was finished connecting the regulator, I jumped back into the truck, closed the door and said let's go.
We left the parking lot and drove down the road, and across the intersection to the nearest gas station. Husband filled up the truck while we waited inside it. When he finished, we eased out of the parking lot and followed the signs to the interstate entrance.
As we crossed the overpass and made a left at the green light onto the on-ramp, we all heard a sliding sound and a faint crash.
Husband asked what was that, and we all began looking around trying to figure out what it was. Husband then said he thought it felt like ice had slid off the back of the covered truck bed.
THE BACK OF THE TRUCK BED! AUSTIN'S PLASTIC CONTAINER!
As I realized what it was and began to tell them in a panic, husband began slowing the truck down on the ramp and pulling to the shoulder. Before he could put it in park, my oldest, sensing my despair, opened the passenger door and jumped out of the front seat and began running back towards the intersection. Husband got out and followed behind.
We could all see it. It still looked intact. They just needed to grab it before any other cars entered the intersection!
And then it all happened...in slow motion. Just as my oldest got there, a semi that was waiting at the light unknowingly turned the corner and squished the box under its wheels, spewing it and its contents like a popped ballon full of confetti.
And I felt like a balloon popped in my heart.
My son and husband collected as many remnants as possible. Remarkably, although covered in mud and ice, a couple of inhalers and other supplies were still intact.
However most were not including my beloved plastic container and its neon green lid.
