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"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.

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Let’s See What This Day Will Bring

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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 “

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Comments

    • 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.”

      • 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

      • 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. 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

  15. 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.

  18. 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

  19. 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.

  21. 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.

  23. 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!

  24. 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.

  26. 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

  27. 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

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

  29. 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.

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

  34. 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

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

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