Results 1 to 7 of 7

Thread: New Blog Post: When Nick is Ill and Mum is Away

  1. #1
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    570

    Default New Blog Post: When Nick is Ill and Mum is Away

    When Nick is Ill and Mum is Away
    Jim and I took our first vacation in a year over the past couple of weeks. Our trip to Cat Island, Bahamas, was fun, refreshing and relaxing.....until I found out that Nicholas had a cold, fever and atypical seizures. Nick was on the downside of a mild cold when we left for our holiday. Saying goodbye, I wiped his nose and kissed him on the forehead to reassure myself that he had no fever. We left Cat Island to come home on Tuesday, but the previous Friday night, Nick had spiked a fever and his cold symptoms returned with a vengeance. On Saturday, he was watching TV with his carer when his arms began to jerk upwards rhythmically. Nick remained responsive throughout this episode, but could not control the movement in his arms. This type of seizure is called "complex partial" and it's unusual for Nick - normally his jerky movements are limited to nighttimes when he is sound asleep.

    By the time we arrived home on Tuesday night, Nick seemed to be a little better from the worst of the symptoms he had experienced on Saturday and Sunday. We had a grand reunion on Wednesday morning with many hugs and kisses - Nick didn't even ask to clear the room before putting his arms around me. We all laughed when someone mentioned the ad for Nyquil on television - that one with the beefy man who has a cold and says to his wife, "Pam, can you call my Mom?" I felt we had missed the worst of Nick's cold and I felt badly about that, but at least my boy seemed better.

    On Wednesday night, we were home after visiting with Nick all day, when the phone rang. It was Josh, Nick's carer, calling to let us know that Nick's temperature was back up to 38.2. One of Nick's daily medications is tylenol, so this was a real fever, especially given that his baseline temp is 36. The nurse ordered a urine sample, but that came back negative for infection the next day. Nick's chest sounded clear, but collectively, we decided to call in the doctor.

    Our GP, Dr. Robert Eaton, is a hero of our community. He makes house calls for Nicholas and others who are bed-bound. He is funny, gentle and smart. After a thorough examination, Dr. Eaton deduced that a chest infection was the likely cause of the fever, even though nothing untoward was discernible by listening through the stethoscope. "No point in putting Nick through a trip to the hospital for a chest x-ray", said the good doctor, "it won't change anything. Let's just give him some anti-biotics."

    So today, Nick will start his penicillin and he'll be better soon.

    Nicholas moving into the Rotary Home was a difficult adjustment for our whole family. But we are learning to trust the staff and Nicholas himself. The last days of my wonderful holiday were a little coloured by mental images of Nick calling for me through a fog of fever and coughing. But I also knew that he was safe in his new home with caring and trained professionals. I received scans of his daily flow charts via email and constant updates about his symptoms. Jim and I sent Nick reassuring messages of love each day along with a countdown of days till our return to Ottawa.

    Part of letting go is drawing the line between what you can and cannot do for a person you love who needs constant care. We will take our holidays, but ensure that we are in constant touch. In Ottawa, we will visit almost every day, but the days that we do not see our young man are days that we phone or email. And we will feel very good about this arrangement until the next time we're away and Nick gets sick. I tell myself that I would worry as much if it were Natalie who was ill, and I know that's true.

    I guess it's just hard to let our children grow up.
    Donna, Mum to Natalie (20), ablebodied, kind and beautiful and Nicholas(23), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when Liverpool football club is losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    945

    Default

    ((((((Donna & Nicholas))))))

    I'm so sorry to hear that Nick has a chest infection, and I will pray for the antibiotics to kick in quickly and for his rapid healing.

    I can only try to imagine letting go while holding on. Because you won't ever truly let go, of course. Nick relies upon you still in certain ways, and you need to be in contact with him and his caregivers. I give thanks for the technology, which allows you to have that contact when you are separated by a distance.

    And I give thanks for Nick's careproviders, who are alert and on top of everything for Nick. They offer you reassurance through their care, and that allows you to let go a little more.

    There is a first time for everything. That's all a part of adjustment. Now this first thing is past, so you "know the drill," and I hope that brings you peace.

    This is a big change in your lives. You're all handling it really well, and it will get easier as time moves forward.

    Please share these ((((((HUGS)))))) with your beautiful son ~

    Prayers going up for all of you!

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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.

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    570

    Default

    Thank you, Rose! It does help to go through things the first time and learn 'the drill' as you say. I am so grateful that we have a team consisting of people who are not defensive when lessons are learned the hard way and who are so collaborative in always working towards better systems for communications and care. And I am grateful for your support as a friend and mentor. I will definitely pass along your hugs today when I visit Nick! xoDonna
    Donna, Mum to Natalie (20), ablebodied, kind and beautiful and Nicholas(23), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when Liverpool football club is losing!
    Check out my blog: http://www.donnathomson.com


  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    945

    Default

    ((((((Donna & Nicholas & Jim & Natalie))))))

    I treasure our friendship, Donna, and I'm so very grateful for all of your support, insight and wisdom through these many years we've communicated here on CN. I could never adequately express my appreciation for your support during Michael's final illness and passing. Your eloquent posts helped me tremendously through those most painful times.

    By now, I am praying that the antibiotics have kicked in for dear Nick, and that he's feeling much better. How did the Warrior prize turn out? Did Nick receive any of his requests, and when will he and The Warrior be chatting?

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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.

  5. #5
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    570

    Default

    Hi Rose! It is in my life plan (bucket list :) to come and visit you, Jim and Jon. One day, I promise! I would just love to chat, hang out, sit with Jon, give you all a gentle hug.... Nick is better and we drew a lot of blood yesterday, so we'll see what that shows. He had a much better night over the past two nights, but he is still feeling slightly nauseated from the antibiotics. Last night the nurse gave him gravel and it helped. And yesterday with me, he was sick, so we stopped the feed and vented and got a lot of gas. He's not eating anything by mouth (he usually very little and only for enjoyment, so it's mainly junk food that he likes), but I've asked his caregiver today to ask the pharmacist about maybe getting some probiotics that can be put through the tube. We'll see! How is Jon? I see you have a couple of responses over on the epilepsy board and also one from me wondering about visual hallucinations...did you have a chance to look at that? Others have queried complex partial seizures and absence ones....we are all thinking of you guys. Sending much love as always, Donna xo
    Donna, Mum to Natalie (20), ablebodied, kind and beautiful and Nicholas(23), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when Liverpool football club is losing!
    Check out my blog: http://www.donnathomson.com


  6. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    945

    Default

    ((((((Donna))))))

    So sorry to hear that Nick has been contending with nausea from the antibiotics.

    Some theories about probiotics indicate taking them after the antibiotic course, while other theories state that simultaneous use of pro and anti biotics is okay, as long as the probiotic is given four hours before/after the antibiotic.

    Yogurt is a good form of probiotic, if Nick can tolerate dairy. Lots of the blenderized diet folks use Kefir as a probiotic. Some even make their own!

    Is Nick's chest infection improving? Poor guy. Prayers going up for his rapid recovery.

    Thank you for asking about Jon. He's better. His home health nurse visited on Saturday, changed his catheter and drew blood. We have the results, which give us a fairly clear indication of the underlying problem.

    I have visited my post on the Epilepsy forum, but I haven't had a chance to respond. I will mosey on over there now, and do so.

    Sending healing thoughts to Nick and you ~

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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. #7
    New Community Member
    Join Date
    Oct 2006
    Posts
    6

    Default

    Re: Kefir. I buy one made from coconut water at Whole Foods since Betsy does not eat dairy

Similar Threads

  1. Angels - A Blog Post
    By Donna Thomson in forum Child Neurology
    Replies: 3
    Last Post: 11-18-2011, 01:27 PM
  2. Nick Seizure
    By Donna Thomson in forum Child Neurology
    Replies: 9
    Last Post: 09-23-2011, 07:07 PM
  3. Blog written by woman with Stargardt's
    By funnylegs4 in forum Visual Impairments
    Replies: 1
    Last Post: 09-09-2011, 02:39 PM
  4. interesting blog post about Epilepsy
    By funnylegs4 in forum Epilepsy
    Replies: 4
    Last Post: 08-23-2011, 12:36 PM
  5. Interesting blog written by blind guy
    By funnylegs4 in forum Visual Impairments
    Replies: 0
    Last Post: 08-20-2011, 12:11 PM

Posting Permissions

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