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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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Something’s Not Right

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Ryan’s had it rough over the past several days. It all began overnight last Thursday. Even as of this morning, I am unable to tell you what’s going on.

Ryan’s heart rate is elevated. His baseline is in the mid-50’s at night at mid-60’s during the day. Today is a little improved, but it has been running 30 – 40 beats per minutes above his normal pace… no matter the time-of-day.

[via popstrip.com]

[via popstrip.com]

He’s also having difficulty digesting his nutrition and water. It’s taking many hours too long to clear the contents of his stomach. Last night was a challenge to just get his medications down, let alone water and nutrition. It was one o’clock when his stomach was emptied enough to give his ten o’clock medications. I can, at any time, measure how much volume he has sitting in his belly — called “gastric residuals” — by pulling it back up through his g-tube. In actuality, this is performed at least a dozen times throughout the day so that he doesn’t get too much (and him throw-up). The good news is (on the other side) his bowels and urine are normal.

His body temperature is running between one and two degrees higher, but don’t jump to the conclusion that he has a fever. He might, but I seriously doubt it. It’s my belief that this is his central body temperature responding to some (unknown) discomfort and not a fever due to an infection. This is quite common in brain injured people; where their core temperature fluctuates. The most prominent example of this is when Ryan came out of surgery and his temperature quickly rose to 109.8 degrees (yes, that’s one-hundred nine). It was off-the charts — literally — as a result of the enormous pain he was experiencing. What it wasn’t was a fever in the way that most people think of it. It all comes from his damaged brain and the regulatory system in particular. Not illness, disease, or infection.

Did that make sense?

I’m 99% sure he is not battling an infection. However, since there is that 1% of doubt we will have his blood drawn today and sent off to the lab.

It’s so frustrating not knowing what’s going on with him. Still, I do know what it’s not because I have been assessing him for days. I visually checked every square centimeter of his body that was physically possible. With the stethoscope I listened to his lungs, heart, stomach, and major veins arteries.  I made sure there was no torsion with his testicles. I scoped his nostrils, ears, eyes, and throat. I tapped on every tooth in his mouth. I moved every bone, joint, and muscle in his body. I gently, but firmly, pushed on him from head-to-toe. With the exception of his chronic hemorrhoids I could find nothing wrong.

Then I asked his doctor to do the same. He came to our home yesterday. I wanted assurance that I didn’t overlook anything.

I didn’t.

It’s so often the case with Ryan that determining issues is accomplished deductively. It’s a meticulously painstaking process of elimination. All because of Austin Vantrease and Jonathan May (both of Newark, Delaware), they have brutally beaten Ryan’s ability to simply say what’s bothering him.

What they did to him on that night in November 2009 just never ends.

 

UPDATE: Feb. 25, 2014

There is no change in Ryan’s condition today. We are waiting on the pending blood work results; which might be today but likely tomorrow.

Some additional information that I’d like to share:

  1. I gave him a dose of medication for urinary tract relief even though there was no indication of a UTI. This had no effect on him which further validates it’s not a urinary infection.
  2. Sue swabbed his stools for the presence of blood. There wasn’t any present (i.e., it was negative for blood).
  3. Ryan’s bowel movement smells slightly different. The best way I can describe this odor is like when I eat jalapeno peppers or (they just don’t agree with me) or drink too much alcohol; then the resulting trip to the bathroom.
  4. [source: wikipedia.com]

    [source: wikipedia.com]

    Like others, I worry that he might have developed gastreoparesis, resulting from the vagus nerve not functioning properly. I worry about a thousand other things that could cause slowed digestion too. I know he had issues with this nerve shortly after the attack because I was the one who demanded it be checked;  problems with sudden and dramatic changes in his heart rate. I’m not seeing any obvious issues with it at this time (uvula is centered and his gag reflex is responding normally), but these simple observations could be misleading since it is just one nerve is a network of cranial nerves.

So, that’s where we are at this point in time. I worried sick about this.

 

 

 

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Comments

  9. I have gastroparesis and it is tough to digest both liquids and solids and to maintain my weight. I am being treated at Johns Hopkins for this, by a GI Motility Specialist. We believe this was caused by a medication I was given for osteoporosis-Prolia. A muscle in my stomach was damaged. Right now, diet change is the course of conservative treatment with a possibility of a stent placed in my stomach in the future. I hope Ryan is digesting things better today and he will continue to improve. keeping you guys in my prayers.

    Reply

    • The medication for Osteoporosis, was it Forteo?

      You say it was difficult to maintain weight, which direction? Were you retaining (and adding weight) or losing weight?

      Did they also diagnose you with Bladder Spasms (also called Overactive Bladder)?

      Reply

      • The medication was Prolia- a twice yearly injectable given by my doctor. I had been on Forteo for two years, prior to the Prolia, and after the Boniva infusion. I only received 2 Prolia injections and because I am slight in build, was only given 3/4 of a dose each time. The last injection was in March of 2011. Since that time, my local gastro doctor was sure I had chronic pancreatitis because of my symptoms and my lipase levels were elevated. In January of 2013, I was referred to Johns Hopkins for a second opinion. I saw Dr. Singh there who is the head of the Pancreatitis Depart. at Johns Hopkins. After a boat load of tests/studies. Dr. Singh determined I did not have chronic pancreatitis but what he thought was gastroparesis. He then referred me to the GI Motility Department and to Dr. Stein. More tests confirmed the gastroparesis diagnosis.

        I had trouble with weight loss- because my stomach could not process foods/liquids normally, even a small amount of food/liquid make me feel full; just can’t eat much. Plus I feel nauseous all the time. Dr. Stein put me on a diet free of gluten, dairy, soy, corn, and wheat. I am to eat every 2 hours and “graze” throughout the day. A dietitian helped me with the food choices because I also have a ton of food allergies to manage as well. I am not losing weight now but am having trouble gaining weight.

        I was not diagnosed with Overactive Bladder, thankfully.

        I hope I have answered your questions. Please let me know if you have others to ask. I’ll try my best to answer them.

        Take care,
        Bonnie Tyrrell

  20. I’m worried, too :(. Thank you so much for keeping us updated and please, please text if you need anything I can give!

    Reply

  25. Praying for your strength.

    Praying for your wisdom to help you ask the right questions, leading you to the right answers.

    Praying for the Medical team you are interacting with, that they listen and watch Ryan with a creative, an open mind and eyes.

    Praying that this helps to ease your understood anxiety and concern.

    Praying that Ryan is on his way to healing.

    AND just PRAYING for “OUR” RYAN ALWAYS.

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

    Reply

  28. Really hoping Ryan recovers quickly from whatever is going on with him right now. You and your family are in my thoughts.

    Reply

  29. Try and stay positive and strong! you, i love getting updates about him, you guys are such strong people. keep your chin up, hopefuly the lab results are something minor.

    Prayers from MN

    Reply

  30. Until the day I see those two boys repent on their knees and beg for forgiveness, get a job and send a check every month to financially pay back for some of the financial burden they put on your life and realize the depths of despair they have caused I’ll wish nothing but an eternity in hell for them. And, I’m a Prayerful Christian who believes in Christ and has Faith! But, I also believe that there’s a place for people like that! In the meantime, you’re an amazing family. You, Ken are a tremendous man!! Keep fighting, because that’s all you can do and damn do you do it well! Ryan is proud to call you, DAD!!

    Reply

  36. We are worried, too, Ken. Have been praying for an update and cannot thank you enough! Stay strong is all I can think of to say, and this means all of us. We will just have to wait for labs to come in.
    Love and prayers.

    Reply

  41. Sorry to hear Ryan experiencing discomfort. Sounds like the Doctor validated the great work you do; good job Ken! We will pray for you and Ryan, and hope he is feeling better tomorrow.

    Reply

  42. Sending Ryan and you Prayers for a quick recovery! He is so lucky to have you as a dad, one of the best and supportive families! Stay strong. ♡

    Reply

  43. Whatever it is that’s going on with Ryan he is very lucky to have his in home personal ICU nurse…..that’s you Ken! It’s all about picking up changes early, doing the tests, eliminating what it is not and putting the puzzle pieces together. Praying that whatever is going on is easily remedied.
    You are right Ken, this is attributed to Jonathan May, Austin Vantrease and anyone who stood by and did nothing to help.

    Reply

  45. I rarely comment, but I’ve been following your posts for the past 2 or 3 years. Ryan and your family are in my prayers. I’m amazed at the dedication you have, taking such great care of Ryan. Many wouldn’t be able to handle it for the long haul, as you have. I’m sorry to hear about this latest problem–I hope you can get to the bottom of this very soon. I’m wondering if he’s developed gastroparesis–you might want to search this and see what you can find out. This could explain the high residuals you’ve been getting. I hope this is helpful, and please keep us posted.

    Reply

  47. Sorry to hear of what Ryan is going through. Some posters have made what sounds like excellent suggestions. You know Ryan’s body as well as you do your own. So, if your gut tells you something isn’t right, go with that gut feeling. You all continue in a lot of prayers. If we have the Prayer Table at our Cathedral, Wednesday, I will, of course, add Ryan’s name and that night, he will be lifted up in prayer in the Worldwide Episcopal Network. Deacon Sue, Dean Collum and several others from our cathedral & the Albany Diocese are leaving Wednesday morning for their annual work trip to Haiti but Sue assures us someone will upload the names & intentions brought up at the Prayer Table. God be with you & keep you all in His care. Please take care of yourself, Ken.

    Reply

  48. Praying for Ryan and hopes he feels better soon. My heart just breaks for all of you. May God Bless you all <3 <3

    Reply

  51. Praying for healing for our Ryan and comfort during this time of extra stress and worry. I’m very sorry this is happening. I am thinking about you all throughout the day. Please keep us updated as you can. And please give Ryan a big hug from me.

    Reply

  54. So sorry for what you all continue to go through. It sickens me to think that the scum who did this will one day be free to resume their lives with relative normalcy, while neither Ryan or his family will ever be the same. You and Ryan are always in my thoughts!

    Reply

  58. It’s not fair. It’ll never be fair. One night two sociopath’s ruined a beautiful boys life and his family’s. A more loving and caring father there will never be. I hope Ryan’s improving.

    Reply

  59. Another thought….he must be having shortness of breath. I don’t know how you check veins with stethoscope–usually arteries are checked—but you may also want to rule out a pulmonary embolism PE. Fever with increased hr could indicate pe, or, he is in pain due to gastroparesis, which in turn will increase hr. Good luck. Keep us updated

    Reply

  62. Please Google gastroparesis—the inability of the stomach to properly empty itself of food. It is a nuclear medicine test. I do hope the doctor who evaluated him suggested this. Let me know..I would also have his stool checked for blood.

    Reply

  65. Praying for answers to Ryan’s symptoms, and for a better day for all of you.

    Sending love/hugs from the Liberty family.

    Reply

  67. Make sure they include magnesium in the comprehensive chemistry panel–it is not a regular part thereof.
    God bless you Team Diviney. Always praying for Ryan and you all. Hang in and prayers continue. Love, Annie

    Reply

  74. Sorry to read this!
    Electrolyte imbalance? Check, “Magnesium for arryhthmia,” or some such… …you know more than I. Praying it is something simple. May need some labs, but don’t have to tell you. I know you know.
    Love and prayers ongoing.

    Reply

  78. I wonder if it could be an ulcer. Ulcers can cause partial or full obstruction making it more difficult for his “food” to empty from the stomach. They can also cause pain. Something to ask doc about

    Reply

  79. So sorry to hear about this. I’m thinking of you from here in Morgantown, Ryan! I hope you’re back on the path to recovery soon.

    Reply

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Ryan's Rally, ℅ Ken Diviney
21092 Carthagena Ct.
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