• ChooseProgress.net (Criminal Site)
  • Ryan’s FB Fan Page

We Got This!

"I tell him I tried. I tried to keep memory alive; I tried to fight those who would forget. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. There is so much injustice & suffering crying out for our attention. We must take sides. We must interfere. -E.W.

  • Home
  • Give
    • Donate
    • Wish List
      • Wish List Items Needed
      • Wish List Orders Received
  • The Story
  • Blog
    • Main Blog
    • Guest Articles
  • News
  • Photos
    • Photos
    • Video
  • About
    • Contact Me
    • About Ryan
    • Keep Ryan Relevant
    • About Me
    • About RyansRally.org
  • Legal
    • Website Disclaimer
    • Civil Lawsuit Complaint
  • Commonly Asked
You are here: Home / News / Something Different (Isn’t Necessarily Better)

Something Different (Isn’t Necessarily Better)

May 23, 2016 by Ryan's Rally LLC 17 Comments

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.

Blood Present in Urine

Blood Present in Urine

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.

Related articles
  • Ryan has Surgery
  • Moral Compass Out of Whack

Please! Share this:

  • Click to share on Facebook (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to email a link to a friend (Opens in new window)
  • Click to print (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to share on WhatsApp (Opens in new window)

Filed Under: News Tagged With: Blood in Urine, Cystoscope, ER

Comments

  1. TC says

    June 7, 2016 at 10:25 PM

    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!
    http://Www.blindfaithlive.com

    Reply
  2. Anna says

    May 24, 2016 at 5:37 PM

    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?

    Reply
  3. Xiom Q says

    May 24, 2016 at 2:04 AM

    You`’re right about doctors. They don`have as much experience with TBI as you do. Im glad that Ryan pulled through all right. 🙂

    Reply
    • Xiom Q says

      May 24, 2016 at 2:07 AM

      No offense to any doctors

      Reply
  4. Mary says

    May 23, 2016 at 10:27 PM

    Scary moments! Hugs to You, Ryan & the family!

    Love,
    Mary

    Reply
  5. Debbie Johnston says

    May 23, 2016 at 9:29 PM

    He knew Debbie Johnston was coming to visit, miracles never cease love it!!!!

    Reply
  6. Patti says

    May 23, 2016 at 8:03 PM

    I am totally convinced that you could be a doctor! You are very smart to go with your instincts. Nice job!

    Reply
  7. Paula Yocom says

    May 23, 2016 at 6:06 PM

    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!
    Paula

    Reply
  8. Pam Linn says

    May 23, 2016 at 5:52 PM

    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!

    Reply
  9. Claudette says

    May 23, 2016 at 4:11 PM

    Well done (as usual) Ken. Can’t beat a parent’s “vibes”
    Peace & prayers

    Reply
  10. Gail Doyle says

    May 23, 2016 at 12:41 PM

    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

    Reply
  11. Sarah Ferrell says

    May 23, 2016 at 12:16 PM

    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.

    Reply
  12. Carla Liberty says

    May 23, 2016 at 12:13 PM

    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!

    SHSP, NGA!

    Love,
    Carla & family

    Reply
  13. Brenda says

    May 23, 2016 at 11:58 AM

    So happy that Ryan has improved. He is truly a fighter and what a blessing you are for him!!

    Reply
  14. Jo says

    May 23, 2016 at 11:49 AM

    Scary beginning, great ending! So thankful!
    Miss you all! SH, NGA! Prayers always.

    Reply
  15. Caitlin Bennett says

    May 23, 2016 at 11:44 AM

    I’m so very happy Ryan pulled through! We all know how much of a fighter he is, as well as you.

    Reply
  16. Cheryl Askew says

    May 23, 2016 at 11:31 AM

    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!!

    Reply

Leave a Reply to Mary Cancel reply

Featured Articles

Just One More Time. Forever is Worth it.

Wife's Turn: Family. It's What We Do.

Ryan, I know What You're Thinking.

I Lost My Big Brother that Night.

Her Turn to Cry: I Want the Old Ryan Back.

I Lost My Hero.

Most Commented Articles

  • Austin Vantrease Father: “Wrong Place, Wrong Time” (155)
  • Ryan Does Something New (155)
  • Ryan has Potentially Life-Threatening Infection (146)
  • Ryan in ICU. Illness Identified. (131)
  • Five Years (131)
  • Kari Diviney: Victim Impact Statement. (125)
  • “Just Let God Have Him” (and Other Stupidity) (123)
  • Austin Vantrease Siblings Speak Out (101)
  • Austin Vantrease Parole Hearing Scheduled (2013) (97)
  • Skull Surgeries Necessary (95)

Log In

SSL Certified: We are Verified & Secure!

Get Email Alerts of New Posts!

Contact Information

Ryan's Rally, ℅ Ken Diviney
21092 Carthagena Ct.
Ashburn, VA 20147
kdiviney@ryansrally.org

Search Ryan’s Rally

Copyright © 2022 · Metro Pro Theme on Genesis Framework · WordPress · Log in