Day Out: Awful and Tedious

Early morning here in Northern Virginia was perfect today. That is, before the sun burned through the haze and climbed higher into the sky. It got hot… fast! The good news is, I had Ryan out on the patio before this. It was a comfortable seventy-degrees and the humidity was bearable. We did some of his therapy — the ActivCycle — before it became uncomfortable and I brought him back into the house. 

He finished his monthly Hyperbaric Oxygen Treatment (HBOT) yesterday, so we were able to take advantage of the time he’s normally in the chamber to get outside. It’s always been my want, since getting the patio, to exercise him at daybreak. Until now, I’ve only had a handful of opportunities. I’m hoping this next thirty days (HBOT cycle off) we can do this much more, provided it isn’t too hot or rainy.

As for me, it was uplifting to drink a cup of coffee and listen to the birds as I watched and worked with Ryan. Sure, it wasn’t complete relaxation but it was something… something more than I usually get. Hey, I wasn’t able to kick up my feet, close my eyes, and enjoy the smell of the morning like any other person, but I did my best to take in every iota of peace between tasks. Well, that’s kind of true because, technically, I didn’t get a break. More precisely, I did this when I would sit down to work on a supply list of all we need to take Ryan to Johns Hopkins later in the week. I suppose I define peace and rest quite differently than most. Actually, I know I do.

As for the Johns Hopkins list I was working on, I was able to get it mostly complete. It’s just a lot of stuff that needs to happen and get packed up to take Ryan out somewhere. This makes no matter how long we’ll be out. Most items need to come regardless of the duration. The difference is, more of some of the items must be put into his “Go” bag, which is rally more like packing for vacation (minus the beach toys and board games).

Ryan returning home after a past day out.

Think of it this way, it’s like packing for an infant taken to the tenth power. In our case, we have an infant that weighs 175 lbs and the equipment and supplies to accommodate this increased mass. Instead of a ten pound compact stroller we need a one-hundred fifty pound stretcher (and I’m not even adding in the weight for the oxygen tanks, vitals monitor, and everything else that is onboard). On top of this, the complexity is increased. It’s not a matter of simply snapping him into a car seat. Hell, no. Not even close! There are mechanized lifts, multiple belts to secure him to the stretcher and multiple anchors to secure the stretcher to the ambulance cabin. Getting him out is even worse!

Now let’s look at feeding time. It’s not as easy as opening a jar of food or giving a bottle of prepared formula. Medication and supplements must be crushed and added. To get the food into his stomach means we need to bring antibacterial soap, examination gloves, a g-tube extension, bulb syringe to check residual and pour the food into, a pill crusher, distilled water to flush the tube, measuring cups, stirrer, g-tube de-cloggers, and sterile bags. It’s equally awful and tedious.

Hospitals are the worst, because of the infection risk. I ask you, when was the last time you packed sterile masks and isolation gowns for a day out? We put these on him for his protection. We discard and change these with each old area we leave. I always have to laugh when the staff asks me if he has an infection. “No”, I tell them, “we’re walking into one”.