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!
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.
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.
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.
Colleen Tansey, Fort Mitchell, KY says
Just read about Ryan and what happened to him. You all are in my thoughts and prayers and I so admire you and your wife. I will try to send something soon from Ryan’s wish list. I will pray for a miracle. You all deserve it! ❤️
Paige Jones says
You amaze me, always. Both of you, all of you! I pray for you all, often! Thankful that you’re back home. Ryan matters to me. <3
One thing I know, Ryan has always had and always will have the best possible care thanks to you and Sue. And by care I don’t just mean physical, but emotional as well. The endless love and devotion you give Ryan is what helps to sustain him, especially when the going gets real rough as it just did. Your love for him is deep, all encompassing – immeasurable. It is breathtaking. Love & hugs being sent your way, along with prayers for continued healing.
Thank God Ryan has you and Sue to advocate for him. As a nurse I see patients who don’t have a clue, do not have an advocate and do not have the financial means to get the necessary medications or equipment.
It is so disheartening the way our medical system has changed in the last 20 years and it is only getting worse with the constant rising cost of insurance and medications. God bless you Ken, Sue and Ryan! Always thinking of you.
Vicky and David Scott says
I totally understand you and SUE… we have to be diligent, we have to follow through, we have to do their jobs for them because they will not. I am so thankful that we are healthy because I can’t imagine keeping up with anyone else’s paperwork, phone calls, follow throughs, appointments etc. Keeps my brain fried sometimes.
So thrilled your boy is home. Praise God
Jenny Duffy says
Good to know that you are all home and blessings to Ryan and your family.
Ann H Tearle says
YAY! Just YAY! Prayers and love.Annie
Thanks for the update! You are the best!
So good to know Ryan is home “relaxing!” Lol