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You are here: Home / News / Let’s See What This Day Will Bring

Let’s See What This Day Will Bring

February 26, 2014 by Ryan's Rally LLC 43 Comments

It’s just after 2:00AM

…and I get a sudden sense of clarity as it relates to Ryan not feeling well. Maybe, I wonder, if it could be a urinary tract infection (UTI) after all? One that is present, but suppressed, by the low-level antibiotic he takes to prevent such an infection? His body is aware of the infection (thus increased heart rate and body temperature), but he is otherwise asymptomatic at this stage? So much so that it has yet to manifest itself in a urine analysis. Would this be true for his blood work too? I immediately fire off an email to his doctor with my insight.

My worry is now that eliminating a UTI as the source altogether, even if the urine analysis is clean, might be a huge mistake. The eventual outcome would most certainly be that the bacterial infection completely defeats the antibiotic (that was merely suppressing the infection) and Ryan is suddenly acute.

My 99% confidence that Ryan is not battling an infection is shattered. Suddenly, I think he might be doing just that. In fact, he probably is. I scold myself for jumping to conclusions, but remind myself that I kept this open as an option… albeit only 1%.

 

It’s just after 3:00AM

…and I’m on the internet. I can’t sleep. My mind is working overtime and I’m consumed with worry for my son.

I hear that distinct “ding” alerting me that my Facebook refreshed in the background and a notification is waiting for me. I’m alternating between two other tabs in my web browser. One is Ryan’s Wish List, which is always open. The other is for researching anything — and everything — that might be causing Ryan’s latest bout of the mystery ailment.

I see that I have one new message (and thank the Internet Gods that it’s not one of those annoying invitations to play FarmVille or Candy Crush).day brings

It’s from a person that I once went to junior high school with, who moved away before the ninth grade (as I recall). I am delighted that she both remembered and found me after hearing about my son from my oldest friend, Grey, who lost his bother over Thanksgiving {The Shoe’s on the Other Foot}.  More so, I was grateful that she thought enough of me — those many decades ago — to take an interest in Ryan.

Her message’s sentiment was direct, but sincere and heartfelt; “I hope you’re getting some rest”.

As is often the case, I’m torn with how to respond. I’m always careful to be open and forthcoming, but it’s often difficult in responding when I so beaten down, scared, and torn apart emotionally. Namely, should I be subtly- or brutally- honest? Or somewhere in between?

I decide that I’ll just type the words as they come… and see how it sounds afterwards. After all, someone thought the [delete] key should be put on computers for a reason, and this might be why. So, I just wrote… in a style that many tell me is distinctly mine (and I think that’s a good thing to be told). Without a second thought when done responding, I hit the Reply button and jumped right back to my research.

 

On Second Thought

Then, I began to wonder if what I actually wrote captured my emotions of the moment. After reading it, I thought it was. Yep, it was a bit raw, but in an effective way, I felt. Then I thought it might even be good enough to share with you, while also giving an update on Ryan. I wrote back:

Nope. Another sleepless night.

I’m constantly calculating how much water Ryan can get based on the undigested contents in his stomach. It must be watch carefully, so that he doesn’t throw it up. Over the past hour he was only able to digest 50-ml of water (which is roughly 2 ounces… or 4 TSP… or a shot glass filled to the rim).

It’s simple math to get as much in him as he is capable, but hugely important. It would be an enormous setback to hydrate him for hours, only to have it all come back up. I’m making every minute count to not only get a day’s worth of fluid in him, but to make-up for some from the day before.

It’s so hard on me, because I had to make the choice of giving him water in lieu of food. He’ll go hungry tonight and has only had one small carton of formula in the last 24 hours (at noon yesterday).

So, I’ll curse my way through the night and wait for the sun to split the darkness. Then I’ll say (and question) what I often do… 

Let’s see what this day will bring “

Related articles
  • Her Turn to Cry: “I Want the Old Ryan Back”
  • Guest Post: Ken Defies the Word “Impossible”
  • Infection Free in 2013!

 

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Filed Under: News Tagged With: UTI

Comments

  1. Rita says

    February 28, 2014 at 12:05 AM

    Praying that Ryan gets to feeling better

    Reply
  2. Mary says

    February 27, 2014 at 9:02 PM

    Praying for healing

    Reply
  3. Maureen says

    February 27, 2014 at 8:21 PM

    Please God be with all of them

    Reply
  4. Paula says

    February 27, 2014 at 7:27 PM

    Praying…

    Reply
  5. Karen S. says

    February 27, 2014 at 6:58 PM

    To the Diviney family,

    We are praying tonight for Ryan’s recovery.

    Reply
  6. Renie says

    February 27, 2014 at 4:49 PM

    How’s Ryan doing today?

    Reply
    • Carla Liberty says

      February 27, 2014 at 5:36 PM

      Renie,

      Here is an update from Ryan’s sister, Kari:

      ” Current update on my brother Ryan:

      Text from my parents: “The doctors have found he has multiple kidney stones and a blockage in his kidney. He also has a systemic blood infection. We are awaiting more information on it and his liver functions are elevated. We are awaiting more on that too. We are about to head in to the first of two surgeries for his kidney.”

      Please keep Ryan and my family in your prayers.”

      Reply
      • Keri says

        February 27, 2014 at 5:56 PM

        Without fail… We’re praying for your brother, the medical team surrounding him and for you and your family.

        Our prayers are your prayers,
        XXOXOXOXO
        Keri, MY C.F. FRANKIE and Family

      • rhondamorin says

        February 27, 2014 at 10:03 PM

        WOW! Kidney stones, sending wellness vibes! I think there needs to be a father of the year award too. Ken gets it! Hands down!!!!!

        I never knew about the fluid and keeping it down vs food. That is crazy and now I understand why some pass away because it’s so much to deal with and keep track of. Thinking of you all.

  7. Keri says

    February 27, 2014 at 9:00 AM

    Another day means another minute, another hour, another day to find answers… You are one smarty pants rockstar of a Dad… You are headed in the right direction- I just know it.

    Another day means another day we can pray for your wisdom and your strength AND for RYAN’s Progress and Health.

    With love and in prayer,
    Keri, MY C. F. FRANKIE and Family

    Reply
  8. Tony says

    February 27, 2014 at 12:24 AM

    Praying to God to help you and hope tomorrow is a better day for you.

    Reply
  9. Jean Dolan via Facebook says

    February 26, 2014 at 8:35 PM

    God Bless you all! Love and hugs and blessings

    Reply
  10. Eric Brightwell via Facebook says

    February 26, 2014 at 5:53 PM

    prayers

    Reply
  11. Eric Brightwell via Facebook says

    February 26, 2014 at 5:53 PM

    prayers

    Reply
  12. Eric Brightwell via Facebook says

    February 26, 2014 at 5:53 PM

    prayers

    Reply
  13. Laura says

    February 26, 2014 at 4:46 PM

    God bless u all

    Reply
  14. Wendy Augustine says

    February 26, 2014 at 4:38 PM

    Thinking of you both.

    Reply
  15. Carla Liberty says

    February 26, 2014 at 4:26 PM

    Hi Ken,

    SHSP, NGA, Prayers for answers and comfort for Ryan.

    Love, carla

    PS: A high school friend of mine was in Atlanta the other day. She was with a group of people, and they passed a billboard that showed Ryan’s picture and the “one fateful night” quote. Because my friend knew about Ryan and had been keeping up with his story, she was able to tell this group of people about Ryan. You never know how many people Ryan’s story touches. But I do know one thing….Ryan remains RELEVANT….not just at home, but across the United States, and the world.

    Reply
  16. Christina Brucker Shupe via Facebook says

    February 26, 2014 at 4:12 PM

    Did they do blood cultures on Ryan? That’s one of the first things we do when our patient’s have high temps. I hope the doctors can find out what is causing Ryan’s pain. Praying for Ryan and your family. I hope Ryan is feeling better soon.

    Reply
  17. Victim Crime via Facebook says

    February 26, 2014 at 3:29 PM

    Prayers sent from all of us at http://facebook.com/victims.support/

    Reply
  18. Karyn Mandracchia Ahern via Facebook says

    February 26, 2014 at 3:13 PM

    Praying you will get some answers from his blood work today. Hang in there you both are the best Parents Ryan can ever ask for and Ken you are wonderful praying for comfort for all today and always <3 <3

    Reply
  19. Jen Lovelace says

    February 26, 2014 at 2:13 PM

    Ken,
    After all these years I am still amazed by your tenacity in getting everything for Ryan figured out. Your love has no bounds. That may be a reason so many people love you! Give Ryan, Sue and Kari all my love.

    Reply
  20. Jennifer Grieb via Facebook says

    February 26, 2014 at 1:42 PM

    Comforting prayers brave father.

    Reply
  21. Paula Dundas Hamrick says

    February 26, 2014 at 12:37 PM

    God bless you Ken. I think to myself, how does he do all of this but then the answer is clear, only by the grace of God. I know sometimes you think that God has forgotten you, but he hasn’t. You are able to care for Ryan because of that grace. You and the entire family are in my prayers and thoughts. I only wish I could do something to make the pain go away and Ryan to wake up.

    Reply
    • Rita says

      February 26, 2014 at 1:32 PM

      Amen. And so many of us out here are continuing to pray on your behalf and Ryan’s <3

      Reply
  22. Sue Bennett Markley via Facebook says

    February 26, 2014 at 12:15 PM

    Just one day at a time Ken and family. Any more than that is just overwhelming. Prayers for you all.

    Reply
  23. PK Miller says

    February 26, 2014 at 9:56 AM

    Ken, I hope you find some answers–be it an undetected UTI or whatever. You know Ryan’s body as well as you do your own. But please take care of yourself, Ken. Get some rest. Many of us worry about you having a heart attack or just collapsing in utter exhaustion. First commandment of a Caregiver is to take care of yourself! God bless!

    Reply
  24. Vicky says

    February 26, 2014 at 9:52 AM

    I often wake up in the middle of the the night with some information that has popped into my brain regarding the care of Jonathan. Sometimes it is helpful and other times it is not valid. I don’t think it is possible for 24/7 caregivers to turn off their brains. I am praying for good information to come back so you can make the right choices for his continued stellar care.

    Reply
  25. Ryan's Rally LLC says

    February 26, 2014 at 9:42 AM

    Maureen,

    Yes, I read them all and am considering them all. I did provide an update yesterday, as an addendum to my post from the prior day.

    Reply
  26. Brenda Livingpositive says

    February 26, 2014 at 9:40 AM

    Ken you are one strong man.today I pray you get the answers you need. What a strong family you have.the bond between all of you is such a strength no one can break it.God Bless.as Always. SendIng prayers

    Reply
  27. maureen says

    February 26, 2014 at 9:38 AM

    Good Morning and another snowy cold one at that. Ken, did you read Mondays comments on the blog. Several people wrote in with a couple of good suggestions of what they thought might be viable options for you to explore as to what may be causing Ryan to not feel well. I missed hearing from you yesterday and was concerned. I know you, more than anyone, wishes that he could tell you and that you could also know what he is thinking since he presently cannot. I wonder if we all took part in a prayer around the world day for Ryan? There is power in numbers; magnetic forces, weights and balances, and so many more driving factors which drive this earthly ship and our human bodies that we ride upon. If we could only regrow and reprogram our brains; that would be amazing. We seem to have higher technologically things we can do with computers and machines, why not our brains. Something is not cooperating in his head and we need to jump start that portion but how? Energy, strength, good health to you & your entire family. <3

    Reply
  28. gail doyle says

    February 26, 2014 at 9:16 AM

    Ken ,
    Hoping the labs reports come in today and you get answers .Then I hope you can get some rest!!

    Reply
  29. KM Jones via Facebook says

    February 26, 2014 at 9:16 AM

    Ken, you’re his best advocate and it takes time to analyze situation (UTI vs. no UTI)…even for doctors. I bet you’re right on target re: antibiotic causing a mild suppression. You’re VERY smart to think of this. I’m hoping for solid info. for you today so things can get on track.

    Reply
  30. Paul Rapsawich via Facebook says

    February 26, 2014 at 9:14 AM

    Hoping the results come back very, very soon. And favorable as well. Ken…you’re an amazing man in an amazing family.

    Reply
  31. Julie Northey Lane via Facebook says

    February 26, 2014 at 9:11 AM

    Praying.

    Reply
  32. Paula Yocom via Facebook says

    February 26, 2014 at 9:09 AM

    Hoping to hear something soon, Ken. Big hugs

    Reply
  33. Jessica Fields via Facebook says

    February 26, 2014 at 8:53 AM

    You are such an amazing father. Ryan is so lucky to have you and even through your sleepless nights, I know you are lucky to have Ryan too.

    Reply
  34. Paula says

    February 26, 2014 at 8:50 AM

    Ken, myself and many others are worrying right along with you, and also wracking our brains trying to get to the bottom of this. I pray the blood tests will reveal something definitive.

    Ken, under no circumstances should you be hard on yourself about anything. This is important for you to realize. I know your approach is always to think something through thoroughly. And it’s not like you have a team of doctors to consult with, because you are the doctor most of the time!!!!

    Please know that from where we’re all sitting, we can see how extraordinarily diligent you are in your observations, treatment and care of Ryan. For whatever it’s worth, one of my family members usually tests clean for UTI but often has one as diagnosed through symptoms. As you astutely pointed out, since Ryan is on low dose antibiotics, you would not see this in your testing. I hope something shows up in the additional tests you have had done for Ryan. I don’t blame you at all for not rushing into antibiotics; your reasoning about that makes complete sense.

    All of us will be waiting to hear any news — and praying — and feeling worried — you’re a phenomenal parent Ken and an exceptional Dad (and doctor).

    Standing by, with love, prayers and hope
    Paula

    Reply
  35. Teddy Heather Goddard via Facebook says

    February 26, 2014 at 8:48 AM

    This day will bring us better answers-that’s what I’m hoping for. Hang in there, Ken, you are the strongest man I know.

    Reply
  36. Grey Hubler via Facebook says

    February 26, 2014 at 8:38 AM

    Let’s get answers today, and then some rest, for everyone.

    Reply
  37. Cindy Carlson Williams via Facebook says

    February 26, 2014 at 8:36 AM

    Sending prayers for peace and comfort.

    Reply
  38. Jo Hobbs via Facebook says

    February 26, 2014 at 8:34 AM

    Praying the labs come in this morning! Hoping for answers in them.

    Reply
  39. debra says

    February 26, 2014 at 8:30 AM

    Its going to be a good day for sure, I pray for the information that you need to figure out for Ryan.

    Reply

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