Updates on Ryan’s illness and recovery are provided at the bottom of this post. Please check back from time-to-time to see how he’s progressing. Thank you, genuinely, for caring about Ryan and keeping him relevant. It means everything to my family!
The night before I watched Ryan even more closely than normal. I couldn’t put my finger on anything, but something just didn’t seem right with him. That was all I had to go on… my instincts.
His vital signs were all perfectly normal. No fever. No elevated heart rate. Normal blood pressure and oxygen saturation. Urine is clear and producing the appropriate volume. Bowel movements are consistent. No indications of discomfort or pain.
Still… I had a sense. I wish I could explain how but, honestly, I don’t even know how this happens to me. This feeling grew throughout the night and I began preparing for a trip to the hospital, just in case.
So, I put his “Go Bag” (and mine) next to the door. It had been four years since Ryan was hospitalized. That time it was because a kidney stone was blocking his urinary tract. We must always be ready to leave without warning. It’s disheartening to live in this reality.
This time we had a brief warning.
With Go Bags in hand, I went outside to warm up the van and damned near had my feet fly out from under me. The sidewalk had iced over from freezing rain earlier in the day. It looked liked polished glass! I made my way up to the car (using both my hands and feet), then offloaded the Go Bags and started the van. I playfully skated back — simulating a hockey stick in my hands — down to the house.
But, I had a problem. How in the hell would I be able to get him, in his wheelchair, up to the van?
I then remembered that I had stored a couple of buckets of Kitty Litter that I bought years ago for this precise situation! I mentally gave myself a pat on the back for the preparedness as I liberally spread the granules by hand.
Everything was ready to go… if we had to go.
Just after 4AM Ryan started breathing increasingly more rapidly. An hour later his respiration rate was three-fold his baseline (16 breathes per minute). Clearly, something was bothering him.
No different from every morning, I did a detailed visual assessment of his body from head to toe. To me, he seemed a little “pudgy” as though he was retaining fluids, so I weighed him. The measurement was so different from just twelve hours ago that I damned-near convinced myself that it couldn’t be trusted. I weighed him again; the same result. Then I weighed him a third time and got the same.
Overnight he gained 1.5kg… that’s 3.3 pounds!
Ryan, shortly after arriving at the ER.
We were at the hospital’s Emergency Room twenty minutes later. By early afternoon he was admitted and given a room in the ICU.
Here’s what I know so far related to Ryan. [Note: Updates are provided at the bottom of this post]. His lower urinary tract is suspected to be restricted. This time it’s not a kidney stone, but something else. I’m told it could be something that was in the making from early in his injury; when the hospitals were catheterizing him on regular bases. Or, it might be inflammation from an infection. Either way what this functionally means is, although he urinates normally, his kidney’s are always retaining stagnant urine.
Although Ryan presented no symptoms (until just hours beforehand), his blood work showed he had an infection and he was in early kidney failure. He was also becoming septic and both his lungs were just starting to develop into full-blown pneumonia. In other words, I caught it early. This was huge for his recovery prognosis. Unfortunately, it doesn’t change the treatment (but surely prevented more treatments).
First, the infection must be knocked out with powerful IV antibiotics and any inflammation in his urinary tract decreased. Then it gets more complicated if we hope to (possibly) prevent future occurrences. This likely involves procedures like scoping and/or imaging. It also might need surgery to remove any stricture(s) along the length of his urinary tract. Let’s hope not.
I’m guessing we’ll be in the hospital for a while even if everything goes ideally. I’ll keep you posted throughout and might just keep updating this post, so please check back from time-to-time.
One Final Thing:
I am often tormented by a thought, but it spikes when Ryan is ill. This time I can’t suppress it as quickly. Beginning on the drive to the hospital (and since) I can only wonder, what if I ever miss something? What if I catch something a tad bit too late? What if my instincts fail, even just once? What could become of him? Would I blame myself for not being perfect in his care?
Yes. Yes, I would.
For now, I’m barely hanging on. I’m physically (beyond) exhausted. My emotions are teetering on the brink. Mentally, well, I’m staying strong but my brain is in overdrive. I can’t shut it off or slow it down.
There’s no changing this either. I know it. The only action is the same as the past eight-plus years… lean in and plow through.
Updates:
- Weds., Jan. 10, 9:30 PM: Recent blood work shows that Ryan’s iron level has dropped (i.e., he is anemic),; a result of the infection. An iron supplement will be added to his medications. If it doesn’t recover via supplement then he will need blood transfusions. First dosage should be administered soon.
- Thurs., Jan 11, 1:00 PM: Just received a comprehensive update from the doctors. In short, Ryan’s blood test, urine tests, and imaging/scans (e.g., sonograms, CT Scans, X-rays, etc.) results are all improving; with some even back to normal. Although he’s getting better, it’s still not a certainty this will continue. However, assuming his continued recovery, the next critical step is to find the cause of the urinary tract’s blockage and the remedy/long-term plan.
- Fri., Jan 12, 12:45 PM: Ryan will be here for at least several more days. Definitely through the weekend. Ugh! The cause of the partial blockage in his urinary tract is inflammation from bacterial infections. The best way I can describe what was happening to him is to imagine a slow, partially clogged drain with the tap turned on; it slowly builds because it fills slightly faster than it can drain. For Ryan, the inflammation (i.e., partial clog) was downstream of his kidneys. This caused his urine to stagnate upstream in his kidneys. The good news — if you want to call it that — is that it wasn’t due to strictures, injury, or kidney stones. Therefore, no surgery or invasive procedures are expected as necessary.
Ryan resting comfortably in ICU (Friday, 01/12/18).
The specific infection is the result of (not just one, but) two, gram-negative bacteria; Serratia & Proteus. Eradication requires him to receive IV dosages of a powerful antibiotic for two weeks, minimally. I’ll need to continue these IV infusions when he eventually returns home. Blood work, urine tests, and imaging (e.g., x-rays, sonograms, and CT scans) are showing normal and expected improvement… but it’s going to take some time. Think of his recovery in terms of weeks, not days. Thank goodness this was caught early, literally in the knick-of-time, when he was in early onset kidney (i.e., renal) failure. Had Ryan become acute then we’d be dealing with potentially deadly serious conditions.
This scares the living hell out of me! Perhaps it helps others understand how it only fuels my angst of “…what if I ever miss something? What if I catch something a tad bit too late? What if my instincts fail, even just once? What could become of him? Would I blame myself for not being perfect in his care?”
The next update could be this evening, but no later than tomorrow. Please check back periodically!
Checking on how Ryan’s doing. Pray he’s feeling a little better and you got some rest SHSP NGA ❤️
Just checking on Ryan…praying he is improving
We are waiting for updates.
Still here, not going away!
❤❤
You won’t fail. If you feel something isn’t right, guess what, it isn’t. Better to be overly cautious, so remember to never second guess yourself. If you think something is off, 10 times out 10 times it’s going to be off.
I had this with my father in law, and I was right 10 times out of 10 times. Trust your gut.
Continued prayers for Ryan to heal and feel better. No one knows Ryan better than you Ken but you are human too. Will always be behind you Sue Kari and Ryan. Always relevant ❤️
Ken, I would trust your diagnosis of Ryan than any Doctor out there. NOBODY, knows Ryan better than you. Key up the faith and great work that you do. I feel as if they should grandfather you into becoming a Doctor. Your dedication is above and beyond the call of duty! You, Sue and Karl are always in our thoughts and prayers.
Ken What caused the infection? Was the inflammation caused by cathing? I avoid caths any time we are in the hospital. I bought urinals at Walmart, cut the handles off, smoothed the place I removed the handle so it wouldn’t irritate his skin. I put the urinal up his gym pants and place a hand towel under it and place the leg of his shorts under the urinal to keep it in place. It really works.
No. Ryan uses a condom catheter exclusively. Not sure exactly what caused the infection, but some things can be ruled out (e.g., kidney stone, stricture, etc).
You are one of the strongest people I have ever met and such an amazing individual!!! Many prayers for you and your family!!!!
Ken…..I truly admire your stamina and courage. I remember thevnight that this happened to Ryan. So very tragic. What a senseless act of violence. And yet, the perpetrators are walking around as if this didn’t matter. There is rremorse whatsoever. I only hope that I will be around when karma catches up to them. She certainly can be a vindictive bitch. My prayers, hugs and love are with you and your family. Take care of yourself.
My prayer for continued health improvement for Ryan continues as well as my prayers for you and the rest of family.
Loving y’all, as always. Never far from my thoughts and prayers!!
Thinking and praying for you Ryan Sue and Kari. You have and will continue to do all that is humanly possible for Ryan. Please Ken , never doubt yourself no matter what . Always here Always Praying Never Going Away NEGU ❤️
Praying hard for you & Ryan right now & in these upcoming days while he’s there (but always, really). You can only do your best & its safe to say that’s what you do 24 hours a day with Ryan. He is beyond blessed to have such an amazing caretaker & Dad!
God Bless you, Ken! Praying for Ryan and your family, as always! Please get some rest, you need to care for yourself so you can continue to take such amazing care of Ryan… xo
Thinking of you all, especially Ryan.
Love and prayers.
Prayers for Ryan and your family.
I’m always inspired by your strength, love and determination Ken….thank god for your instincts!
Always praying for Ryan and your entire family….
My heart is so heavy but also hopeful in prayer for all of you in this latest challenge. Please keep us posted on Ryan’s treatment and progress in the hospital, and let us know if we can do anything for your family. We love you all so much.
Sending prayers and love and hopes for some rest for you.
Stay strong sir, I’ve been following you , and Ryan’s situation for a long time. You’re a good man. god bless you.
Your an amazing father. I can only imagine how exhausted you must be. Please take a little time for yourself to rest now that he’s being looked after.
Continued prayers for Ryan, you, Kari and Sue! You are superman for the love and care you have given your son over the years. I admire you! Try to rest a little while he is in the hospital.
Holding each of you up in prayer.
Always. Forever. Until.
Love, Keri
I don’t know you but your love and determination for Ryans health is incredible and inspiring. He is so so blessed!
Prayers from Illinois. Parents have incredible instincts. Take a shower, then a nap. You NEED to be fresh and alert.
Ken, I’m so glad you have gut instincts and listen to them. Juanita and I are praying for Ryan, you, Kari, and Sue.
Prayers from Montana. I know this won’t change the way you feel but I think if every Dad were more like you, this world would be a much better place. It is too easy to doubt yourself when in fact you’ve been amazingly selfless. I cannot even begin to imagine what you all have been through. Ultimately, you will have to find some sort of peace knowing that you have done everything a man, father, friend can do to keep Ryan comfortable and relevant. No loving God could ask more. Thoughts and prayers to your beautiful family.
sending ((hugs)) and prayers.
Diane
You’ve always known better than everyone Ken, but unfortunately that leave so much weight on your shoulders. Thinking of your family and Ryan.
You did a perfect job with Ryan. Now we leave it in the hands of the Doctor’s. My prayers for you and Ryan and family. We will get through this…….
Caregivers need compassion too. Often times, the people that know they will be forgiven for their mistakes are the people that make fewer of them. I hope you continue to arm yourself with strength.
Thank God for your gut instincts Ken!!! Rarely are you wrong. I lift up my prayers for you, Sue, Kari and of course Ryan. I will be waiting to hear more.
I enjoy reading every story on here! It makes Ryan’s everyday feel as we all are there as we hang on to your every word, hope, and prayer. Praying for your sweet boy…I’m still looking forward to meeting Ryan!
Ken I have always worried about the cath with Corey. We have been in the hospital so many times and each time they want to cath him. I buy urinals at Walmart they are heavier than the ones they give you at the hospital. I cut the handles off and smooth them with a finger nail file so not to injury Corey. I put gym shorts on him and place the urinal up his pant leg with a small hand towel under it. I place the leg of his shorts under the urinal so it will stay in place. WAHA no cath. This has worked for 12 years. Thinking of you and your family especially Ryan. What hospital is Ryan in?
We have him in a local hospital near our home.
Here praying….love, Annie
Go and take a nap and then get back to your boy, you know him better than anyone.
Kudos to you for your intuition, This happened to us Thanksgiving weekend a year ago. Fine the night before, two back to back seizures at 5 a.m. and downhill from there. Three days in the hospital with IV… same diagnosis… scratching our heads throughout the whole thing. Praying for recovery. BTW, we used a product I purchased online called Disolvatol by Kidney Stone Labs which dissolved his kidney stones… natural product. Keep us posted. Praying