Hoping for a Better Day.

Ryan’s day will begin shortly. I will get him up after his percussion therapy (we have a bed that does this) is complete. Percussion therapy is performed four times a day to mobilize secretions in his lungs.

His night was peaceful, unlike the previous two. My best overall measurement of how he’s doing is his heart rate. He stayed in the mid-60’s all night. A good night.

Yesterday’s issues really didn’t completely subside until early evening. After the morning’s high body temperature, Ryan was digesting food/liquid extremely slowly.

Throughout the day, like every day, I perform a task called “checking gastric residual“. This measures the undigested volume being held in his stomach. Mostly it’s undigested food and liquid, although does contain some stomach acid. This process involves manually (no pump) suctioning gastric content (from the stomach) back through the g-tube (feeding tube), measuring it, then returning it to the stomach. A nice little side benefit from doing this is it releases any air pockets formed his stomach.

The average human stomach has a maximum volume of around 1,000 ml (or 1 liter). For Ryan, we are careful to never allow him to exceed 300 ml at any time. This is preventative in an effort to reduce the risk of aspiration. So, before we ever give him anything in the g-tube we always check residual.

Too boring? I was hoping it might help the readers better understand some of the complexities in managing Ryan’s well-being. There is, literally, no room for error. One oversight can have devastating outcomes.

A reader commented that it feels like we can never leave our guard down. This is very insightful. It’s true. We are meticulous on gathering hard data (heart rate, oxygen saturation, body temperature, residual, urine output, etc.) and other indications (skin color, eye redness, coughing, bowel characteristics, urine characteristics, body tone/posture, vocal clues, lung sounds, bowel sounds, etc.) to arrive at a determination of Ryan’s health at that moment and how it fits into an overall trend. Essentially, we assess how close he is to his baseline.

One thing I’ve learned with Ryan — as I can best describe it — is his response to treatment is like driving on an icy road. If we over-correct, he’ll be heading uncontrollably in the opposite direction. We need to ease manage this with a degree of instinctive precision. For example, when he spiked high fevers the past two days, it was best to attack it hard at first (ice, fan, undress, etc). But the instant he showed signs of recovering it was best to begin thinking about hypothermia. Sure, I want his temperature to return to normal, but I must be patient. Being too aggressive will assure him layered in heated blankets afterwards. Warm him too quickly and we’ll be icing him down. It’s scary.

Okay. Here we go. Hoping for a better day.

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About Ryan's Rally LLC

kdiviney@ryansrally.org
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20 Responses to Hoping for a Better Day.

  1. Evelyn Boxley says:

    My best wishes and prayers for a much deserved Valentine’s weekend.

  2. Jo Hobbs says:

    Just the good report I’ve been waiting to read! Ryan was on my mind and in my prayers all night. Sleep — wake — sleep — wake — you know the process when something big is on your mind. When I awoke this morning, prayer was first on my mind, then I went outside and looked at the gorgeous sunrise. It changes so fast from red, to orange, then to golden. It is a good way to begin the day. I couldn’t believe how many bird songs I heard! Our maples are budding, meaning Spring will soon be here. For me, outdoors in the early morning is the best time to commune with God.
    I know He hears our prayers, and we can never give up our hope for a miracle for Ryan. Still here.

  3. Rita says:

    Your instincts with Ryan are amazing — what a blessing. Thank God things seem to have settled down for now. We are praying for a calm day for you, Sue and Ryan so you can just “relax” in your routines and enjoy each other’s company. We hope that Kari has a good, drama-free weekend at school also. Are you able to share what you and Sue learned from the IBRF people with us yet? We do hope it’s encouraging…

    • Rita, I had hoped to get something out yesterday but Ryan had a rough day. It didn’t even have one second to analyze the call. Today is completely filled until 5:00PM or so. Maybe I can get back to it tonight, but likely tomorrow at the earliest.

      • Rita says:

        No rush… we’re just always eager to hear good news regarding Ryan’s treatment plan. We’d rather you try to catch up on some rest today and get back to us tomorrow ❤

  4. Gail Doyle says:

    Dear Ken So glad to hear Ryan had a good night…you all deserve it. …. Simply unbelievable all you do during the day and night( and Sue too) May God continue to give you the strength and health to get thru this. I feel better days are ahead and Ryan is saying “thanks Mom and Dad” Hope also the things needed to make it a little easier will come(exercise table ,etc) Hoping for a restful ,peaceful weekend for all God Bless~. Gail (NY)

  5. sally ellis says:

    I’m so glad you and Ryan had a peaceful night. I hope this weekend brings the same.

  6. Anna says:

    Ken, You are becoming quite the ICU nurse! You are doing an incredible job with Ryan! He is so lucky to have you and Sue as his caregivers and parents. Every child should be so lucky. Here’s to a GREAT day!!

    • Jo Hobbs says:

      Just wish Nurse Ken had helpers he could call on for support. Is this a possibility anytime in the future? Are there nearby Team Diviney supporters who could be called on in times of near-crisis or crisis situations. What do you think, Ken?

  7. Carla Liberty says:

    Ken,

    Thinking of you, Sue, Ryan and Kari and hoping that today brings some much needed rest and calm waters. I pray that the last couple of days’ troubles are well-behind you and that moving forward you are met with incredible healing and strength. You folks are more than deserving of catching a break.

    Sending love and warm hugs. See you tomorrow for a quick dinner drop off.

    Love,
    carla

  8. Will says:

    Ken I love reading about the care you give Ryan. I am sure it is exhausting. But I also know what greater gift can a Father give to a Son. My prayer’s continue. And it is important for you to continue to vent your feelings. We listen. I listen.

  9. Bonnie Perkins says:

    Ken
    As I read this every day, I see my brother doing these same routines a few years back. I hope your days will continue to get better with Ryan. I remember Matthew being in the vest that would do the percussion therapy for him. Going to see him Monday and the Childrens Hospital for a Valentines Day Party for all the children. They’re even having a DJ so I’m sure Matthew and all the little children will enjoy it. You and your family try to look forward to the better days ahead when Ryan will be able to enjoy the good things in life again.
    Still praying for you all,
    Bonnie

  10. Cheryl Onderchain says:

    I don’t know how you and Sue do it. Your relentless dedication to provide the best of care for your son is just amazing. I hope today was a better day.

    XOXOXOXOXOXO

  11. This is so tough, both parents are Ryan’s Doctor’s and nurses. Tired isn’t in your vocabulary because both of you loyal, loving, patient parents will go above and beyond day and night, around the clock, non stop to do for your son. As I mentioned before, it’s going to be a very very very slow healing process for Ryan, but he’s already a miracle, he’s made it this far so just a while longer, and he’ll be fine. It’s hard but keep the faith even if things get scary, keep the faith.

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