Page 3 of 3 FirstFirst 123
Results 21 to 24 of 24

Thread: For Donna: Nick's Update

  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,180
    Blog Entries
    1

    Thumbs up

    ((((((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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

  2. #22

    Default

    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.

  3. The following 2 users say "thanks"


  4. #23
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,068
    Blog Entries
    9

    Default

    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


  5. The following 2 users say "thanks"


  6. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,180
    Blog Entries
    1

    Thumbs up

    ((((((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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

  7. The following 2 users say "thanks"


Page 3 of 3 FirstFirst 123

Similar Threads

  1. Donna
    By joy in forum Emotional Support
    Replies: 14
    Last Post: 05-30-2014, 05:26 PM
  2. Replies: 4
    Last Post: 04-05-2013, 08:11 PM
  3. A new Blog Post about Advocating for Care Plus update on Nick
    By Donna Thomson in forum Child Neurology
    Replies: 3
    Last Post: 03-22-2013, 07:11 PM
  4. Update on Nick
    By Donna Thomson in forum Child Neurology
    Replies: 12
    Last Post: 02-14-2013, 03:43 PM
  5. Nick in Residential Placement - an update
    By Donna Thomson in forum Child Neurology
    Replies: 7
    Last Post: 11-20-2011, 11:51 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.