Normally, I am excited whenever something new or different happens to Ryan.
Not in this case.
For the first time — at least that I remember — Ryan spent the entire day at home in bed.
Let me take you back to earlier last week. We were at the cabin and had just gotten Ryan’s van back from the shop (after four months!). It wasn’t a day too soon, as it turns out.
That morning I got Ryan out of bed, just as I normally do. I took note that his urine looked darker than usual. This happens from time-to-time (but rarely) and typically resolves itself. As the morning progressed and I put him through his therapies my concern grew. The concentration of his urine became quite dark. The best way to describe its appearance was the color of root beer (see photo to the right).
It was clear that he had (old) blood in his urine. Hell, I cold smell it! That mere fact that it was brownish meant it wasn’t an active bleed.
That evening the color began turning brighter. First, the color of tea. Then that of orange soda. By midnight it had turned red and I could visibly see clots in his collection bag. There was no denying it, he was actively bleeding somewhere along his urinary tract.
I monitored him all night, charting anything that might be useful. I measured urine volume. I noted color and concentration. I physically checked his prostate. I externally prodded his bladder and abdomen for hardness or distension. I felt comfortable that as long as he was moving urine I could prevent a visit to the hospital.
A blockage would mean an immediate trip to the ER… after I did an in/out catheterization to empty his bladder, that is. Yet, now I was at the point where if there wasn’t improvement soon then I’d need to get him checked.
Around four in the morning, the pattern of his urination changed. It became much more frequent, but of lesser volume. Instead of purging 300 – 400 ml all at once (like any healthy person does), he was moving 50 – 75 ml more frequently. Sure, over any given hour his average output was comparable, but it was now persistent “squirting” as opposed to singular emptying.
Now I was faced with two concerns: active bleeding that was not improving and volume/frequency change.
Before getting him up for the day, I started to batten down the cabin; in case I had to leave with him quickly. Remember, we were at the cabin and adequate healthcare was an hour away. Oh, I also had three dogs with me to consider.
It was actually the dogs that made the decision for me to leave. I simply had to get them home and remove that as a variable.
We drove home, arriving around noon. I left Ryan in the van and whisked the dogs into our house, forgetting to allow them to go to the bathroom (that turned out to be a problem!). On the way back out to the van I grabbed our “Go” bags, which are stocked as much for Ryan as for me.
After six hours and running every test practical, I left the ER with Ryan.
… without knowing what was causing the blood in his urine.
All tests — urine, blood, imaging, etc. — looked great. Even though we had no idea what was wrong, we knew what wasn’t. At least that’s something, right? We knew it wasn’t: stones, kidney trauma, bladder trauma, prostate, urinary tract infection, or internal hemorrhaging.
I was asked to keep Ryan in the hospital overnight for observation. I declined for several reasons, but mainly for two. First, the inherent risk of infection. Let’s face it, hospitals are crawling with them… and more than a few are highly resistant to effective eradication. Second, they would monitor him no differently than I. In fact, I knew I would be more vigilant.
In fact, I knew I would be more vigilant.
So, we agreed on my marching orders. Well, kinda…
The plan was to monitor him; look for signs of infection and/or urine blockage. I agreed with that, for sure. There was the suggestion to put Ryan on an antibiotic, which I flatly refused (and didn’t get any pushback on). What we didn’t agree on was their instruction for him to see a urologist the next day for a cystoscope exam. I damned near got them to agree with me that this procedure should wait for 72 hours to see if it’s necessary!
Here’s my way of thinking…
While at the ER, I asked for a consult with a urologist. He advised that a cystoscope could identify if (and where) there was bleeding. Okay, good. But I wasn’t satisfied with the answer to my follow-up question… then what? The answer… continued monitoring. I pressed him more:
Me: Isn’t that [monitoring] what is prescribed anyhow? What would be different?
Dr.: Well, nothing really. But at least we would know the cause.”
Me: “How would that information help us?”
Dr.: [No response]
Me: Given there is risk in a scoping, both in introducing infection and in exasperating a current condition, what is the overriding benefit?
Dr.: We’ll know exactly what’s going on.
Me: Okay, I understand. But… how, specifically, is this knowledge helpful and actionable?
We went round-and-round for a while longer. Hey, I get it… the doctor(s) was doing what he thought was right (and undoubtedly covering his ass). The difference is this; he was doing what he believed was correct for Ryan and himself, while I had no other considerations other than Ryan. Neither one of us were wrong, but it does highlight a costly flaw in healthcare.
Neither one of us were wrong, but it does highlight a costly flaw in healthcare… be it the fear of malpractice by ordering of unnecessary/untimely procedures.
Anyhow, I’ve learned to trust my instincts when it comes to Ryan’s well-being. I’m telling you, mine were screaming at me to hold off of the cystoscope. In the end, I’m happy I did!
I brought Ryan home and put him to bed for the night. By morning there was no noticeable improvement… but he was no worse. Then I did something I have never done.
I left him in bed….
For the whole day…
And the next night…
The following morning — thirty-six hours later — I moved him to his wheelchair and did gentle therapies.
Later on, without prior indication of impending improvement, his urine completely cleared! It was instant!
I’m happy to report that it has stayed clean ever since, but I’d like to give it another day (or two) before claiming the problem is solved.
I’m praying for Ryan ….
When you need to hear some hopeful real life miracles, here is a link to a weekly podcast that chronicles miracles. MI hope one day Ryan is on the podcast!
Glad the hematuria is gone. Could of been a kidney stone who knows, but keeping contamination away from Ryan is best. Way to go Doctor Ken! Always thinking of you. How’s Keri doing with nursing school?
Xiom Q says
You`’re right about doctors. They don`have as much experience with TBI as you do. Im glad that Ryan pulled through all right. 🙂
Xiom Q says
No offense to any doctors
Scary moments! Hugs to You, Ryan & the family!
Debbie Johnston says
He knew Debbie Johnston was coming to visit, miracles never cease love it!!!!
I am totally convinced that you could be a doctor! You are very smart to go with your instincts. Nice job!
Paula Yocom says
You were right as usual Dr. Ken. Truthfully, your medical knowledge in many ways surpasses the doctors. It would be nice if the docs could provide you with a higher level of “help” but it seems more often than not you have to figure things out and deal with them yourself. Good thing for Ryan you’re smart and you have excellent instincts. But gosh that’s a lot of pressure on you. I wonder what transpired to cause the bleeding — something possibly associated with Ryan’s physical therapy perhaps but what would cause it to suddenly begin? On another note I’m so glad you finally got your van back and sorry it took that long. Praying the bleeding doesn’t return as I know you don’t want them doing that exploratory test and with good reason. Thinking of you guys and hoping the skies turn sunny and blue so you can enjoy the mountains in all their spring splendor.
Love & hugs, and I remain still here and still praying!
Pam Linn says
I also have a son at has a TBI. He was a mining engineer graduate of WVU. We battle so many UTIs. Used condom caths then the Liberty caths. The liberty caths stayed on so much better. In April he had Botox in his bladder. It left hi, unable to completely empty so we now have to Catherize him 4 times a day. I found out to always follow your gut! We as parents know what is best for our children! God bless you on Ryan’s recovery! My son just started walking unassisted after 2 1/2 years! Never give up hope! Remember to also take care of yourself. I know it’s exhausting but you need to be health for Ryan!
Well done (as usual) Ken. Can’t beat a parent’s “vibes”
Peace & prayers
Gail Doyle says
Glad Ryan is doing better .Continued prayers always Ryan is so lucky to have you for a Dad and for all his family. Always here NGA Love ,Gail
Sarah Ferrell says
I could only pray that if something ever happened to me, that I too would be loved and cared for the way you do to your boy. God Bless your strength and courage.
Carla Liberty says
Glad to hear Ryan’s bleeding has stopped. How scary this must have been for you! Hope everything continues to improve. You got this, Ryan!
Carla & family
So happy that Ryan has improved. He is truly a fighter and what a blessing you are for him!!
Scary beginning, great ending! So thankful!
Miss you all! SH, NGA! Prayers always.
Caitlin Bennett says
I’m so very happy Ryan pulled through! We all know how much of a fighter he is, as well as you.
Cheryl Askew says
All I can say is “Thank You Jesus”….. There’s also something to be said about a loving parent’s intuition. Ryan pulled through yet again! I just love him!!