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Thread: For Donna: Nick's Update

  1. #21
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    ((((((Donna)))))) ~

    Jon had Atelectasis at least once, when hospitalized with pneumonia and intubated. Like everything else, it's scary. Jon also prefers to lean to his left side. His new mattress has bolsters on either side, and it seems to keep him more centered in the bed.

    I'm relieved that Nick's fever is down. Is he still on antibiotics?

    Adjusting the feed rate can be so nerve-wracking. I understand, as we are doing that regularly now with Jon, as he's having respiratory issues. I worry about him getting enough nutrition, but then I worry about him being ill, when he can't tolerate his regular rate. It's frustrating, and my heart goes out to you.

    I'm glad you took the day off and are with Daisy. Nick's crisis has been very stressful and frightening. I know that feeling of being all wound up as well as numb. It's surreal sometimes. Do you ever have moments where it feels like you step out of yourself and observe what's happening in disbelief? I have.

    Sleep? Rest? What's that? Illusive, that's what they are. When your world is turned upside down, rest and sleep are nearly impossible. It's when it's most needed, and yet it's the most difficult to do.

    Hypervigilance and freaking out. Sounds very familiar. Any setback, however small or easily remedied, is still cause for concern. When there have a been a series of setbacks and moments of sheer fear, it's impossible to be casual about anything.

    So, let's focus on all of the incredible positives in Nick's recovery.

    Nick's gallbladder and all of its stones are gone. YAY! I've never really understood the purpose of the gallbladder other than generating stones. Jim has gallbladder stones. Lots of people have healthy lives without a gallbladder. If we don't need it, why do we have it?

    Nick's temp is down. He's breathing on his own. He's working up to tolerating his feeding rate, but we know that will take some time and tweaking, so we can be patient with this process. ("Editorial We" ~ meaning we, as Moms.)

    Nick is making progress. That's the best news of all!

    As fragile as our children are, it's quite astonishing at how much strength they have to endure unimaginable crises, pain, discomfort, and any challenge in their way.

    Nick is a strong, determined, and courageous young man.

    We're all surrounding Nick, you, Jim, Natalie and your family and loved ones, with our prayers, love, and support. You're not alone ever.

    I wish I could be there with you today. You'd put your feet up and snuggle with Daisy, while I did the house cleaning. (I'd bring my Daisy, the Roomba!) I'd make us a lovely vegetarian meal, and we'd walk Daisy. We'd hug, and cry, and pray together. There would be plenty of sighing. And laughter. I'd stay as long as I could or until you banished me!

    In my heart, I am there.

    WE LOVE YOU!

    Love & Light,



    Rose & The Guys
    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.

  2. #22

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    Dear sweet Donna,
    Know that I have been lifting up prayers daily. I too, wish that I could be there with you. I think you, Rose and I, could be quite the trio. Will continue to watch for updates. All my love and prayers my friend.

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  4. #23
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    Hi Dear Friends! I am happy to report that we brought Nick home from the hospital today. He was so happy to come home. His nurses were ready and we sat down for a long chat about getting back to our usual feed and med regime once Nick got settled into his own bed. We spent a happy afternoon just chatting and everyone came in to say Hi and welcome home. Now I am well and truly exhausted. Jim and I will both sleep tonight for sure. Thank you all for your love and prayers - I know that your energy helped me to help Nick. 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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  6. #24
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    ((((((Donna, Jim, Nick, Natalie & Family)))))) ~

    Wonderful news! Welcome Home, Nicholas!

    I'm sure that everyone is delighted to see Nick and thrilled that he's doing so well.

    Sending many prayers that the transition goes smoothly and that Nick is back on his regular schedule soon.

    Once the crisis is over, and the adrenalin stops pumping constantly, exhaustion really sets in. I'm praying you and Jim sleep very well tonight. Take some time to recoup and rest too.

    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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  8. #25
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    Hi everyone,
    Nick is much better! He is home and even went to a movie this week. He still isn't eating by mouth yet, but we are consulting with his nurse about when soft foods could be started. I'm in no hurry to push it. I keep reflecting on the fact that Nick is complex for sure, but not frail. He is so resilient! That said, when my guy gets sick, he goes downhill very fast. I was talking to another mom today and I was saying that the older I get, the more difficult I find these crises. I find it harder to get up again when Nick gets better. I guess that's just old age. I had a tooth extracted yesterday and I'm feeling a bit down from the pain of an abcess. But I know that tomorrow will be a better day! The sun is shining and spring will come. I love you all and appreciate your caring here so much. 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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  10. #26
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    Quote Originally Posted by Donna Thomson View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi everyone,
    Nick is much better! He is home and even went to a movie this week. He still isn't eating by mouth yet, but we are consulting with his nurse about when soft foods could be started. I'm in no hurry to push it. I keep reflecting on the fact that Nick is complex for sure, but not frail. He is so resilient! That said, when my guy gets sick, he goes downhill very fast. I was talking to another mom today and I was saying that the older I get, the more difficult I find these crises. I find it harder to get up again when Nick gets better. I guess that's just old age. I had a tooth extracted yesterday and I'm feeling a bit down from the pain of an abcess. But I know that tomorrow will be a better day! The sun is shining and spring will come. I love you all and appreciate your caring here so much. xoxo Donna
    So glad Nick is home and doing well! I did not know Nick could take food by mouth. I thought he was tube fed as it says in your signature. I'm sorry about your tooth. Ouch!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  12. #27
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    ((((((Donna)))))) ~

    Wonderful news! Already in a movie theater? That's a rapid recovery for sure. What movie did he see?

    I'm so sorry about your abscess and toothache. I hope that you have something for pain. Are you on an antibiotic too?

    Our kids rebound faster than we do from a crisis. First, you're run down with an infected tooth, which infects the system. So, please take that into consideration. Some of the exhaustion, when the crisis has passed, is from that constant adrenaline pumping during the crisis. The lack of sleep, the incessant worry, the major decisions, and being on the brink of "what's going to happen next?" for days on end.

    It's not only our age. It's that we've been doing this with our boys for so long. We've been through so many, well, countless crises, and we're worn out from it.

    Also, when we get a break from crises, when things are going well for our boys, we are lulled into a space, where we feel comfortable and relieved. We forget that at any moment things can go South. And when things do go South, we're snapped out of our "things were so normal for awhile" place. It's a shock.

    It is traumatic for us to repeatedly go through these crises. I think we all have some form of PTSD from all that we've been through with our children. We have coping tools, because we have to have them, and we've learned which ones to use through experience.

    There really isn't one thing that's easy about parenting a child with special needs, other than our profound love for our child. That love is what propels us through the crisis and helps us regain our balance, once the crisis is over.

    You need time to catch your breath. You've been through a lot ~ it's not that long ago that you lost your mom. And Nick's crisis was scary in every aspect. Please be kind to yourself and give yourself a ton of credit for your strength and perseverance. Stock up on your rest and peaceful interludes. Snuggle with Daisy. Let the tension flow out of you with breathing and meditation.

    Sending many healing prayers for you, Nick, Jim, Natalie and your family and all of our love always ~

    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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  14. #28
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    Oh dear Rose, you always find the words to comfort me (and so many others)! Yes, everything you say is true. There are a few real truths in the path we walk eh? Let's try to name them. 1) Nothing cures a crisis like another crisis (a different one) 2) If you get a rest and lulled into relaxing, it's hard to come back 3) weathering crisis doesn't get easier over time, it gets harder 4) the worst worry is when something NEW crops up (and I always think of that Dorothy Parker line, "What fresh hell is this?") 5) Love is the great engine and energizer 6) You can sleep when you die. Can you think of any other real true-isms Rose? Mary Grace? Funnylegs4? I love you! Thinking of you all right now and oh, I have to tell you that Erin Gough (remember Erin from NZ?) was on Twitter earlier this evening reminiscing about the good old days of the internet and I was reminding her of her CN. She is a lawyer now and doing really well, although finding Wellington not very accessible. I think she'll be PM one 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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  16. #29
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    ((((((Donna)))))) ~

    Thank you for sharing an update on Erin. I miss her. She probably doesn't have any spare time to post here, but I would love to hear from her with her latest news.

    I've added #7-#10 to your list of Truisms.

    TRUISMS

    1) Nothing cures a crisis like another crisis (a different one).

    2) If you get a rest and lulled into relaxing, it's hard to come back.

    3) Weathering crisis doesn't get easier over time, it gets harder.

    4) The worst worry is when something NEW crops up (and I always think of that Dorothy Parker line, "What fresh hell is this?").

    5) Love is the great engine and energizer.

    6) You can sleep when you die.

    7) There is always one more thing.

    8) Trust your gut.

    9) No one knows our child better than we do.

    10) Sharing our journey with others, who are in the same boat, is the best coping tool.

    Thank you so much for your prayers for us, Donna, and please know that we pray for you, Nick, Jim, Natalie and your family every day too. I'm just so very happy Nick is recovering so well. This is prayer answered, for certain. Thank You, God.

    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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  18. #30
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    Thank you! I'm going to blog about our list and ask readers to share their essential truths, too. I will let you know how other caregivers reply! xox
    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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