The plan was to get up at 5:00 so we could be on the road by 8ish. But the prepacking of the RV lasted until 2ish. So we got up at 6:30.
Now our packing cannot be all predone. Once I was up I started my first breathing treatment of Xopenex and Pulmicort. Once Danielle was up and started on her Xopenex treatment Dad started the rapid breakdown of equipment. Out came two boxes and in went the monitors (2), wheelchair battery chargers (3), my mike charger, 2 6 prong plug adapters, extension cords, Mom’s bi-pap, and Dad’s CPAP. Oh, I almost forgot all our props. I have a special head pillow, 2 props for my ventilator tube, two arm props, leg pillow, foot pillow, and butt prop. When you can’t move and things dislocate-set up is supreme. Danielle has a special head pillow and 7 other props…boxes now full. Then my nighttime stand with ventilator and food pumps and chargers and my oxygen concentrator. Danielle’s ventilator and oxygen concentrator. There was already an oxygen concentrator in the RV hooked up to the generator. Meanwhile I am finishing up my morning medical care with a Pulmozyme breathing treatment, Atrovent puffs, teeth brushing and chapstick. Once that is done, Dad grabs the nebulizers and toothbrush-in the bathroom bag. During the whole packing process, interruptions abound for the bathroom, suctioning, etc. Finally, about 9:00 we say a prayer and are off!
What better way to start a road trip then by jamming to the music of the Cars CD. “Life is a highway, I wanna ride it all night long…” and “get your kicks on Route 66.” By the way we saw Amarillo, Gallup, New Mexico, didn’t forget Winona, Kingsman, or Barstow and Oklahoma City wasn’t mighty pretty but we drove through there, too. I tried to write in my journal, it was very bumpy-these words came out fine… “As the wonderful realization [of this trip] hit my eyes brimmed with tears and my heart with gratitude for my incredible family and the goodness of God…”
About 30 minutes into the drive, Grandpa calls Grandma and tells her that her brother, Bill called. Not so remarkable, except that Bill called to say that he had moved from West Virginia…
To Orlando.
My Grandma hasn’t seen Bill since I was 7 (14 years). He is getting up there in age and was recently diagnosed with Alzheimers. Grandma has really, really been wanting to see her brother.
Now, she will.
I also wrote:
“Thank heavens for the bathroom as this is our 3rd bathroom run in 1 and a half hours of driving.” I don’t know if it was the excitement or the fact that Danielle, Grandma, and Mom knew that this was the first trip that they could drink. Usually dehydrate is the name of the game as my Dad earned the infamous name of
Captain PeeNomore…
We didn’t stop driving to go to the bathroom (except for Mom). It was interesting and kinda fun being carried in a moving car. Going to the bathroom in a driving, jostling car was a unique feeling that led me to exclaim, “it feels like I am surfing.”
I think I’ll insert my journal entry from 2:48:
“We are crossing the first mountain pass-tehachipi. I’ve crossed this pass before so I am not concerned. There is a nice big window across from me (I am sitting sideways) and I have probably the best view I have ever had while driving. The sound of the engine switching gears is a little unnerving. I can tell that the RV is working. The desert mountains are nice. Sloping hills dotted with green shrubs are in view and ever so often I can see the mountain. I wonder what other Creations of God I will see on this trip? Ooh, I looked up to a beautiful view layers of land all stacked up and leading to a stunning mountain. I think this trip …
Yikes the oxygen alarm just went off!
Schew Dad fixed it.
Grandma & Danielle broke into a rendition of ‘I love the mountains, I love the rolling hills’ as I was saying I think this trip is going to be good for me. Maybe I’ll get my sense of adventure back. I like the sides of the hills with the rocks…pretty, pretty.”
Sadly, things didn’t remain light hearted. It seemed like someone was always asking Dad for something-food, water, bathroom, oxygen, ventilator, breathing treatment, entertainment, positioning, etc. It didn’t help that he was tired. So, his temper came through loud and clear. As if that wasn’t enough we had a few adventures.
We had more generator adventures when we pulled off to get gas.
Tip: if the sign after the exit points to a ghost town, the regular town probably doesn’t have much in it.
While we were pulled over, dad started heating up the preprepared food (Grandma had cooked and frozen spaghetti, hamburger stew, homemade chicken noodle soup, and minestroni stew). And with the microwave, overhead air and concentrator on, the generator blew.
No oxygen and 3,000 feet and no way could we keep going without oxygen.
Dad, THE man, quickly reset the generator and we made a note not to run all three again…. Sigh of relief.
I saw some more pretty sights. Lots of the hills and mountains had small black rocks peppered on top. At one point when the sun was setting, a shaft of light was piercing through the cloud all the way to the ground. It was beautiful. As we got closer to the desert, there were these strange combo cactus/trees. They had tree trunks but instead of leaves there were spiny things. I believe they are called Joshua trees.
(not our picture...off of google)
We made it to Needles, CA the goal. But since we got there late, we slept in a not so nice “hotel.” Travelers Inn. Pfff. I would not call it an inn. Our rooms were on the second floor up an elevator. Unfortunately, it took Dad quite a while to unload.
One room (my room) had a really pathetic air conditioner. Needles is HOT. The whole drive was hot. The area of the RV where I was sitting was 89*. Mom decides to restart the air conditioner in the hotel room to see if it will help. She goes to turn it back on…
Nothing.
Oh no.
Even in the winter we sometimes have to turn on the air conditioner at night because the oxygen concentrators are like mini heaters.
Mom calls the front desk.
They can’t fix it.
They will change us to a suite-no extra charge. For most people that would be great…but Dad just spent the last 4 hours unloading. It’s 11:30. We are tired.
Dad comes in. He is drenched in sweat, panting, weaving when he walks and says he feels faint-mom tells him the news. Dad despairingly says, “No! I am physically and emotionally exhausted, I can’t do it!” And starts to get emotional.
“I can’t do this!”
And at that moment the air conditioner came on. Hallelujah.
I go to bed and fall asleep fast. I wake up when mom and dad are laying down and I overhear a conversation. Mom is emotional and apologizing to dad saying she should of never planned the trip and that she is putting too much as Dad.
Then she asks, do you want to still do this?
Dad says, yes, my children are looking forward to it.
Earlier in the RV while driving some lemons were bouncing out of a truck and mom ran over them. Will we squish the lemons of this trip and turn it into lemonade? Or will this trip become a lemon and squish our spirits?
Christamae
Question: Would shorter, broken up chapters be better?
Coming up: Trapped!
Crash, Trapped, Altitude Sickness-oh my!- Page 3, Post #36