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Thread: For Donna: Nick's Update

  1. #11
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    Default Surgery Complete

    ((((((Hugs to All)))))) ~

    Nick had successful laproscopic surgery at 11:30 p.m. yesterday. The surgeon was able to remove the entire gallbladder, which was full of stones. Nick still has his MicKey in place. The surgery lasted 1 1/2 hours.

    Donna and Jim left after Nick was back in ICU and stable. They must have been so exhausted.

    Of course, now the concern is infection, so the physicians/nurses will keep a close eye on Nick.

    ((((((Donna, Jim, Nick & Natalie & Family)))))))

    We are holding you all close in our hearts and in our prayers. May those antibiotics work perfectly.

    We Love You!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  3. #12
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    So glad the surgery was a success! Prayers to all!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #13
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    ((((((Hugs to All)))))) ~

    Nicholas has an ileus (see link below for explanation of an ileus), but it is slowly resolving. He is tolerating Peptamin, a pre-digested formula at 10 ml/hr.

    Ileus:

    https://www.healthline.com/health/ileus

    We continue our prayers and sending healing, positive energy for Nick, Donna, Jim, and Natalie. May every day bring more progress toward returning home.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Hi Everyone, thank you Rose and everyone SO MUCH for your love and support. Your prayers are working - Nick had his first decent day today. He had his gall bladder removed the night before last and of course it was complicated because of his scar tissue from his fundoplication in addition to his intrathecal pain pump being in the way and his Gtube. But our Doc is the best trauma surgeon in the region and he was fantastic. He did it laparoscopically. Next challenge was ileus (Nick was not absorbing anything through the stomach including meds given by gtube). Anyway, by end of day today he had managed to absorb 10ml per hour of Peptamen pre-digested formula. It's working. We are optimistic - boy, it was scary though at the height of the infection. We have a wonderful intensivist - she loves Nicholas. Fingers crossed for recovery and thank you so much for all your love and support xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  8. #15
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    Thumbs up

    ((((((Donna, Jim, Nick, Natalie & Family)))))) ~

    What an ordeal Nick and you all have been through. I give thanks for the surgeon's skills and for the love and caring of his physicians and nurses.

    You must be exhausted. So much stress and anxiety. We've been cloaking your with our shawl of love and prayers and sending healing, positive energy for strength, and for rest and peace. Jim and I can see ourselves sitting next to you at Nick's bedside. It's so vividly familiar to us. Our hearts are with yours.

    Liverpool won today! Jim stayed awake to watch the match as long as he could in Nick's honor and to root for Nick's team. He fell asleep before the final outcome, but we were so glad when we learned that Liverpool was victorious.

    We send you all of our love and constant prayers. Rest for all of you. May every day bring more and more improvement for Nick. May the antibiotics work effectively. May his tolerance for Peptamen increase. May he be pain free. May his vitals remain strong, and his bladder and bowels work properly.

    WE LOVE YOU!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  9. #16
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    Thank you thank you thank you everyone. Nick was discharged from ICU to the surgery ward this afternoon and wouldn't you know it, just on checking his vitals on admission to surgery, he had a fever - 37.8C. Long story short, Nick had a chest xray and it showed a collapse of the left lower lung = this caused the fever. It is from bed rest. It's a condition that starts with L - I can't pronounce the name and he's never had it before (amazingly!). He had some nausea this morning with his feed running at 40ml/hr so they rested him for a while and then restarted at 30 which is going now, so far so good.
    Thank you all so much for your love and support. We feel it, we really do. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  11. #17
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    ((((((Donna)))))) ~

    Is the term you're looking for Atelectasis?

    https://medlineplus.gov/ency/article/000065.htm

    I'm so sorry that Nick has this complication, and I pray it will resolve quickly. Is Nick on O2?

    Good news that Nick is out of ICU. One step closer to home.

    I know how frustrating it is to have to reduce the formula rate and continue readjusting until the full rate can be tolerated. I'm praying that Nick will soon be able to tolerate his regular feeding rate.

    How are you and Jim holding up? I hope that you're getting some rest and sleep.

    We are sending healing prayers and all of our love to all of you.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  13. #18
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    Hi Rose, yes - that is exactly what Nick has. It's a combination of having had breathing tubes, being in bed and also always lying on his left side. This is his most comfortable position because of his bad right hip. His temp is down this morning so the tylenol is working and we've been trying to persuade him to lie on his back more. I think he may be discharged Monday or Tuesday. I hope he is able to tolerate his feeds by then. He was running at 40 ml yesterday but he got nauseated so we lowered to 30 for the rest of the day and o/n. This morning we're trying 40 again. He's got 10cc/hr running of IV fluid so that's good. It's all going in the right direction, just a few hiccups along the way. Jim is going in today for the day and I'm taking a day off. Probably I'll go over and pick up Daisy and clean the house. I am pretty tired but Rose (and everyone here on CN2), you what it's like. It's the shellshock thing - emotional exhaustion and hypervigilance. I think it will be good for all concerned that I take today off LOL - otherwise when there's any little thing wrong, I tend to freak out these days. There have been too many close calls recently. Anyway, I send my love and prayers to you all - hoping that Jim is doing OK with his awful radiation, Rose. I read your post the other day and was so sad and worried that it was so very difficult and stressful. I pray for you all every day. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Oh Donna just reading this! Wow what an ordeal! I'm so so sorry. Sending healing prayers for Nick.
    Mary Grace

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  17. #20
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    Thank you Mary Grace! He is on the mend now, thankfully. :) I hope you and Kathleen are well!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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