No matter what's going on you are keeping tabs on our 11 year old. When I am working, you take him to his baseball games, oxygen in tow. You drive him there and wait in the car because you are too weak to walk to the field ( I keep reminding you to bring binoculars and you ignore this -no matter, you are... still there). During the school year you helped him stay on track for homework and chores -not to mention spelling words... You are a most amazing person, and although you feel that you never do much----- You Do!
With the diagnosis of my husband's illness, Pulmonary Fibrosis, I have been looking at everything as an opportunity to create a new memory. When our wedding anniversary approached, I scheduled a mini-trip to a casino about an hour and a half away. I wanted my husband to feel completely comfortable with the trip because even short destinations can cause him anxiety. Who can blame him? Leaving the security of home with this illness, one must take several precautions. It can be a matter of life or death...
We called the oxygen company two weeks in advance, hoping for a travel machine that provides a continuous stream of air, converted from room air and plugs into the car's cigarette lighter as well as to a regular electrical socket. The company did not have any and indicated that many people reserve these machines and then do not return them as scheduled.
Back up plan: We would bring a 12 gallon liquid oxygen canister, which weighs about 80 pounds. One of these canisters were delivered and strapped into the back seat of our car. The idea is that we would bring his mini-machine (about the size of a coffee grinder) which gets filled from the 12 gallon canister and provides short puffs of oxygen into his nose every time he takes a breath. During the drive he can hook up directly to the 12 gallon and in the room we would utilize the mini-machine and I would refill this machine from the car every four hours. As a final precaution,we would bring another canister that allowed four more additional hours of continuous air (although this one he would use while I refilled the mini-machine).
Sounds like a lot, although I figured it would be worth it just to provide him with a destination and to help break up his schedule at home, which, I imagine at times, seem pretty mundane to him.
Once we were all packed up, we were off to our destination. Our room was really fun. A retro, 70's style room, with lots of cool angles and lines. We wore comfortable, elastic waistband pants with the sole purpose of completely gorging upon the wonderful Friday-night buffet -and that we did! After dinner, we returned to the room and I ran out to the car to refill his mini-canister.
We settled in for the night and once he was comfortable and in bed, I took his saturation readings with a finger pulse-oximeter. For those not familiar, this tells us the oxygen level in his blood, as well as monitors his heart rate. A safe saturation level for my husband would be anything over 92, but, the monitor kept reading in the low 80's. He insisted that once he falls asleep his saturation would increase and not to worry about it.
Just looking at him, I could see that he was feeling extremely weak. I let him rest, but there was no way I could rest or relax enough to even fall asleep for fear that he was not receiving enough oxygen. His mini-machine was turned up as far as it could go, but it only provided tiny, little puffs into his nose, rather than a continuous stream of air. I considered packing everything up and just getting him back into the car, where he could be hooked up to the big machine.
I ended up contacting security where they were kind enough to wheel the big machine on a dolly up to our room. Within a few short minutes I could see the life come back into my husbands face. His saturation quickly climbed to over 92 and I watched my husband with relief. He was relieved, too. From that point on, everything was fine, but in the back of my mind, I realized what a scary situation this was and felt a wave sadness for my husband and anyone that requires oxygen for survival.
Once we arrived back home, I almost wanted to kiss the ground. We both tell each other that it was a learning situation, but I see that the excursion took a lot out of him. It took him nearly 3 days to recover from the experience. He says that there will be no more road trips unless it involves a travel coach, you know, like the kind that music stars travel in.
I just had to laugh and say, "No problem, I will start writing letters to Alan Jackson immediately."
Most importantly, we are learning what equipment works for him and what does not. In the meantime, maybe he will settle for a Winnebago...