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Thread: For Donna: Nick's Update

  1. #1
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    Default For Donna: Nick's Update

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

    I've copied and pasted your post from Jon's thread about Nick's hospitalization, so that you have a place to share updates.

    We have been at the hospital (well, we ARE at the hospital) with Nick. He had a pain and fever crisis two nights ago and turns out that his bile duct was blocked with sludge causing an infection leading to sepsis. They called a code yesterday morning, but luckily they managed to stabilize him and in the evening scoped out the sludge allowing the infection to drain into his gut. His gall bladder is till infected though and they'll operate to remove it either tomorrow or Sunday. They removed the breathing tube this morning and stopped the sedation. He's not tolerating feeds yet, but hopefully that will come with a bit of rest and after the gall bladder is removed. Today we got a little smile. Step by step, a modus operandi that I learned from you. Oh, and we have a terrific Mama intensivist in the ICU who said she treats Nick 'like one of her own' - she's great. Sending love and so glad that Jon is better! I know Nick will be better soon too xoxo Donna
    My heart is one with yours.

    Sepsis, calling a code, intubation, procedures, surgery ... I'm right there with you, holding your hand, praying with you, hugging you, loving you all.

    How many antibiotics is Nick on now? Jon and Michael had so many at one time, and I had to check all of them for interactions with their seizure meds. If you want to email me a list of Nick's antibiotics and seizure meds, I will gladly research them for you. Or anything else that you need and haven't the energy to do.

    A Mama Intensivist is wonderful. We give thanks for her compassion and care for Nick and for comforting and reassuring you and Jim.

    Please let us know when Nick's surgery is scheduled so that we can focus our prayers that day and time.

    I'll be lighting candles in Michael's room this evening for Nick and you, and I'll ask Michael to watch over you, although I know that he is already there beside you.

    We surround you with love from around the globe Our prayers and positive, healing energy are flowing toward you.

    The Unity Prayer

    The Light of God surrounds us.
    The Love of God enfolds us.
    The Power of God protects us.
    The Presence of God watches over us.
    Wherever we are, God is!

    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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    Thank you so very much, Rose. I know that flagyl is one antibiotic - the other one I don't know the name - one is every 12 hrs, one is every 24. He is on his regular morph and loraz as well as lyrica for pain, but they've added dilaudid in hospital. xoxo D
    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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    Sending prayers up for Nick!

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    Default Prayers Continuing

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

    Healing prayers continue for Nick and strength for all of you. I can imagine that you're all exhausted, so I pray for rest for you. I'm praying that Flagyl and the other antibiotic are working well for Nick.

    We are with you, talking about you and praying for you. Jim has asked me at least a dozen times today whether we have news about Nicholas.

    We hold you close to our hearts, and we send you all of our love.

    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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    Donna so sorry to hear this! Sending many prayers your way.

    Mary Grace

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    Quote Originally Posted by Donna Thomson View Post
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    Thank you so very much, Rose. I know that flagyl is one antibiotic - the other one I don't know the name - one is every 12 hrs, one is every 24. He is on his regular morph and loraz as well as lyrica for pain, but they've added dilaudid in hospital. xoxo D
    Donna, Yikes! When I saw the words "code" and "breathing tube" I got very scared. Full huge bucket of prayers heading your way immediately! I hope Surgery goes well and I'm so glad he is awake and on pain relief! Please Keep us updated!

    Thanks for adding this thread Rose.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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

    Donna emailed me this morning that Nicholas is scheduled to have laproscopic removal of his gallbladder today. She and Jim are very pleased with the surgeon and feel confident that Nick is in good hands.

    Nick might need to have his MicKey button changed to foley for 6 weeks. He also might need a drain post-surgery.

    We're all holding hands and surrounding Nick, Donna, Jim, Natalie and their family and loved ones with prayers, healing energy, and abundant love. Thank you all for joining in our prayer circle.

    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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    I hope the surgery goes well! I will continue praying.

    Excuse my ignorance Rose, but what is the different between a MicKey button and a Foley? I have seen a MicKey button before.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    ((((((funnylegs4)))))) ~

    A foley feeding tube is what I refer to as PEG G tube. Michael had and Jon has a PEG. Their PEGs have a mushroom shaped cap, which holds the tube in place inside the gut. The tube is about 12" long and attached to the mushroom cap. Some PEGs have balloons, but we prefer the mushroom cap.

    We've never had a MicKey, because we've found the PEG to be more manageable for us. For one thing, access is easier. We have to tend to Jon's G tube frequently, and with a long, attached tube, there is less disturbance, when he's sleeping. We don't have to lift his shirt/gown and attach a tube to set up or finish feeding or give meds or water flushes. The port for the tube is resting on Jon's shoulder at all times.

    A MicKey button is low profile, where a PEG has more to it. Both are effective venues for enteral feeding.

    Anxiously awaiting news from Donna. Prayers continuing ~

    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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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    A foley feeding tube is what I refer to as PEG G tube. Michael had and Jon has a PEG. Their PEGs have a mushroom shaped cap, which holds the tube in place inside the gut. The tube is about 12" long and attached to the mushroom cap. Some PEGs have balloons, but we prefer the mushroom cap.

    We've never had a MicKey, because we've found the PEG to be more manageable for us. For one thing, access is easier. We have to tend to Jon's G tube frequently, and with a long, attached tube, there is less disturbance, when he's sleeping. We don't have to lift his shirt/gown and attach a tube to set up or finish feeding or give meds or water flushes. The port for the tube is resting on Jon's shoulder at all times.

    A MicKey button is low profile, where a PEG has more to it. Both are effective venues for enteral feeding.

    Anxiously awaiting news from Donna. Prayers continuing ~

    Love & Light,



    Rose
    Ah, thank you Rose! So PEG/Foley are interchangeable terms? I knew somebody with the MicKey button and have seen the MicKey button on TLC documentaries.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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