Ryan’s Home! Let’s Get Back to Work.

Ryan was discharged from the hospital yesterday afternoon sometime around three o’clock. [Note: You can read my post about his hospitalization by clicking this link: Ryan in ICU. What If I Ever Miss Something?]. We ran into an issue as we’re walking to the elevator. It involved our insurance/Medicaid related to IV infusions he’ll begin receiving at home today. Basically, the hospital’s Case Manager didn’t do her job in confirming coverage. Had we not caught this oversight (i.e., laziness), it could have interrupted his critically-regimented dosing and would have personally cost us over $700!

Anyhow, I turned Ryan’s wheelchair around and parked him back in the room we vacated just seconds before. He was going to stay there until it was resolved. We were holding the room hostage. I was pissed and someone was sure-as-hell going to hear about it, but I never had the chance.

My wife, Sue, jumped into action before I knew what was happening. More accurately, she launched herself into it. Suffice it to say that she wasn’t letting anyone off-the-hook until everything was resolved. It takes a lot, but I can always tell when she’s reached a mental state that I simply call “locked-in”. I mostly know by the look in her eyes. It’s not so much that she’s looking at you, but it feels like her gaze is piercing through you. It’s unsettling… and a bit scary, really. Whenever Sue gets to this point it’s obvious that whoever is her “target” is in trouble. Deep, deep trouble. I know this because, sadly, it’s been directed at me more than I care to remember. I also know that when it’s not at me then it’s best to get the hell out-of-the-way! If that’s not an option then I get as small as possible and melt into the furniture.

Roughly an hour later we were on our way. It’s best not to mess with her when her children are involved!

Enough said?

When we arrived back at our home I brought in everything — in a sealed plastic bin — that we had with us at the hospital. We all showered and laundered the clothing we came home in. What’s nice is that our washer has a “sanitizing” setting and the dryer has an “antibacterial” one. We disinfected everything that was in the plastic bin… including the bin itself. Hell, I even disinfected the bleach container! We simply didn’t want to bring a bug home with us. Especially knowing the flu and a stomach virus was rampant at the hospital.

Ryan resumes his therapies. Here he is cycling six miles (over an hour). This photo was taken at 8:40 PM last night, after discharge from the hospital.

Then Ryan and I got back to work with his therapies. I didn’t push him as hard since it had been a week since he last worked out. But I wasn’t easy with him either. I’d say I kept him around 50% of his normal routine. Ah, maybe more…

Once we had him settled in bed, I turned my attention to disinfecting his equipment and supplies. Everything is getting sanitized (or thrown away) while he is covered by his IV antibiotic. Whatever caused the infection/contamination will be eradicated… make no mistake about that! 

I’m burning through disinfecting wipes, Lysol Spray, and bleach like crazy! Every square inch is getting sterilized with a hand-held UV wand. Nothing is spared from my obsession.

Even the dogs got an antibacterial shampooing!

I want you to know my sincere appreciation for having everything I need available to me. Without fail, you, and others like you, make sure Ryan gets all he needs, and more, from his Wish List. People often tell me that I do an incredible job taking care of him, but I tell them it wouldn’t be possible without others giving him the resources. He gets these directly from you and, without you, he would never be as healthy, active, and comfortable as he is today. 

Not even close.

It’s not inconsequential or by chance that he went four years without significant illness or injury. Sadly, he is prone to these and can never be entirely avoided. Simply stated, he’s high risk for, well, everything. It’s a fact that others in similar conditions — albeit not to this extent — are hospitalized, on average, at least four times a year. Mainly for pneumonia and urinary tract infections. I’m so thankful that we caught it so incredibly early this time, preventing him from certain full-blown systemic infection! Ryan went four years without a spontaneous UTI (Urinary Tract Infection) or respiratory infection; to include pneumonia! In fact, he was infection free for the entire year before that (2013) occurred.

Remarkable.

Truly, remarkable.

I hope you see how much you help him. Thank you for keeping him healthy. Thank you for keeping him relevant. Thank you for caring. I need you, for Ryan’s sake.

Related articles

• Her Turn to Cry: “I Want the Old Ryan Back”
• Kari Reflects: I Lost My Big Brother that Night