Sometimes it is an honor and privilege to be a part of my patients's lives...

by JustBeachyNurse

3,230 Views | 9 Comments

Presently I work as a home health/private duty nurse with medically complex/fragile pediatric patients. Most of my patients would require medical day care or inpatient placement if not for skilled nursing services. Many of my patients have fair or grim prognosis for their recovery and/or development.

  1. 20

    Sometimes it is an honor and privilege to be a part of my patients's lives...

    One of my primary patients is shattering all predictions. He was a very sick boy, failure to thrive diagnosed with CP. Initial prognosis was poor for 'normal' cognition, ability to control trunk or head, and mom was told to not get her hopes up that he would be mobile without a wheelchair. My patient is not even 2 years old yet. But the doctors wanted to be sure mom had the worst case scenarios based upon their assessments.

    Well my patient has been kicking prognosis butt. He's been acting like a 2 year old, letting us all know what he does and does not want to do He shocked my nursing supervisor when she came for a 60-day visit and he was babbling up a storm and made it clear that he did not like not being spoken to. He's making huge advances in his progress in therapies.

    But yesterday was the awesomest. (if that is even a word) Mom works with him in the late evening when his siblings are in bed before its time for him to be tucked in. She mentioned it seems like he is taking steps. I know, as a mom myself, sometimes wishful thinking seems like reality.

    Yesterday we were waiting for his turn at one of his many medical appointments. He was in a great, happy, silly mood. Mom was holding his hands and he took 4 steps, actually lifting his knees and awkwardly planting his foot. I could tell she wasn't shifting weight just giving him something to hold on to. Since he does (fortunately) prefer mom over me I held his hands so he could walk to mom...OMG that was the best feeling ever. I could feel him press into my fingers to support his weight to lift first his right knee and foot then his left. All with the biggest grin on his face, squeaking with his delight before he fatigued.

    He hadn't been specifically working on walking motions in PT for a couple of weeks which to me is even more amazing, though I suspect the fact that his siblings are now toddling around walking may also be an incentive and example.

    Of course as a mom, I was happier that the first time this happened in 'public' was with mom there as she struggles with having to miss things since she and her husband both work full time. Another family was in the waiting room and because of the nature of this particular medical office fully understood the magnitude of my patient's accomplishment and were quietly cheering him on with smiles on their faces so as to not startle him and incite a spasm.

    When we finally saw the specialist he smiled and said he was not surprised that his little guy is 'messing up' the statistics and predictions. I don't think mom or patient could smile any bigger. I was just honored to be able to witness the event.
    Last edit by Joe V on May 12, '12
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  4. About JustBeachyNurse

    JustBeachyNurse joined Aug '10 - from 'East Coast, USA'. JustBeachyNurse has 'Is there ever enough?' year(s) of experience and specializes in 'Medically Complex/Fragile Pediatrics'. Posts: 20,762 Likes: 7,422; Learn more about JustBeachyNurse by visiting their allnursesPage


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    9 Comments so far...

  5. 0
    Happy tears over here for you and your young charge What an awesome feeling it must have been!
  6. 0
    Beautiful!!! I've got goosebumps all over and a big smile thanks to your story. I'm glad you shared it with us!
  7. 1
    Thank you. My favorite part of my job is being able to witness the progress of my patients, and the smiles on their parents' faces as their baby kicks another milestone out of the way . Another patient was thought to be nearly blind and once they tried glasses the specialist was blown away by what she could in fact see.
    xoemmylouox likes this.
  8. 0
    Wow! Makes so much of the mundane and insane tolerable to see this kind of amazing thing. Just wow!
  9. 0
    Thanks for sharing your story, it brought tears to my eyes! We really do get to see the best and worst moments in peoples' lives and it is an amazing privillage and honor.
  10. 0
    Quote from JustBeachyNurse
    One of my primary patients is shattering all predictions. He was a very sick boy, failure to thrive diagnosed with CP. Initial prognosis was poor for 'normal' cognition, ability to control trunk or head, and mom was told to not get her hopes up that he would be mobile without a wheelchair. My patient is not even 2 years old yet. But the doctors wanted to be sure mom had the worst case scenarios based upon their assessments.

    Well my patient has been kicking prognosis butt. He's been acting like a 2 year old, letting us all know what he does and does not want to do He shocked my nursing supervisor when she came for a 60-day visit and he was babbling up a storm and made it clear that he did not like not being spoken to. He's making huge advances in his progress in therapies.

    But yesterday was the awesomest. (if that is even a word) Mom works with him in the late evening when his siblings are in bed before its time for him to be tucked in. She mentioned it seems like he is taking steps. I know, as a mom myself, sometimes wishful thinking seems like reality.

    Yesterday we were waiting for his turn at one of his many medical appointments. He was in a great, happy, silly mood. Mom was holding his hands and he took 4 steps, actually lifting his knees and awkwardly planting his foot. I could tell she wasn't shifting weight just giving him something to hold on to. Since he does (fortunately) prefer mom over me I held his hands so he could walk to mom...OMG that was the best feeling ever. I could feel him press into my fingers to support his weight to lift first his right knee and foot then his left. All with the biggest grin on his face, squeaking with his delight before he fatigued.

    He hadn't been specifically working on walking motions in PT for a couple of weeks which to me is even more amazing, though I suspect the fact that his siblings are now toddling around walking may also be an incentive and example.

    Of course as a mom, I was happier that the first time this happened in 'public' was with mom there as she struggles with having to miss things since she and her husband both work full time. Another family was in the waiting room and because of the nature of this particular medical office fully understood the magnitude of my patient's accomplishment and were quietly cheering him on with smiles on their faces so as to not startle him and incite a spasm.

    When we finally saw the specialist he smiled and said he was not surprised that his little guy is 'messing up' the statistics and predictions. I don't think mom or patient could smile any bigger. I was just honored to be able to witness the event.
    I too Have had the wonderful honor of watching the very same things. I have been doing this career for over 7 yrs. I guess I have a knack...lol I never second guess the child themself or Gods great plan. I treat everychild as a normal sentient human soul. I treat them like kids try to always play, and learn. I had one "Locked in" child who COULD communicate with his eyes...blinking yea or nay. I was able to share that with his parents who ntotally wept when there was really "Someone" in there. We played tic-tac-toe... I almost always lost....Yes RN hands on work feeds MY soul...God Bless all of you who truly get it.
  11. 0
    Yay!! What a great moment for you and for mom. I've been a nurse for 30 years, and moments like this still catch my heart. I am in awe of the families I've worked with, who go on day to day with kids whose prognosis is dire (my current assignment has 2 with Duchenne's MD). All of the moments that defy diagnosis/prognosis are precious. How lucky are we to share in that?
  12. 0
    Thank you for writing this!
  13. 0
    enlightening~ thank you for sharing......aloha~


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