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Thread: Re-posting - give me your thoughts on this one. Plus an update on Nick :(

  1. #1
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    Default Re-posting - give me your thoughts on this one. Plus an update on Nick :(

    http://www.donnathomson.com/2013/04/...tough-one.html
    That's my blog post which I want to chat about.

    But also.... last night I heard that one of nick's helpers did a body check and noticed a raised red lump on his spine. Looked like a boil or something like that. Anyway, I went over today to check it because I knew it was near the spine and sure enough, it is almost exactly where the baclofen catheter goes into the spinal cord. And it's infected. So I called the doctor and God bless the man, he came over to have a look and said to put bactroban topically and we'll start oral antibiotics tomorrow. If Nick gets sick, we'll bring him into hospital for IV antibiotics. Hopefully it's just a topical skin thing and not a spinal cord issue.

    I'll keep you posted.
    xox 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


  2. #2
    Distinguished Community Member andromeda31's Avatar
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    Hi Donna,

    I hope the oral antibiotics take care of the infection and that Nick doesn't have to go to the hospital! (((hugs))) I agree, there is not much spontaneity in my house. A big reason for that is having so many young kids, not just that Caitlin has many medical issues. Before we had kids, Brian & I went out to eat all the time, now, we just go on our birthdays....and we still haven't gone out for his (march) yet! (too busy being sick) Arranging for a sitter is hard as we have only ever had family watch the kids and I hate asking for 'nothing' when we may end up needing help for a real emergency. Now that the boys are older and a little easier to manage, I have been thinking about hiring a neighbor girl so Brian & I could go out to eat (like a 2hr outing) and see how that goes. I was thinking if we fed the kids and get them into their jammies and have Caitlin tucked into bed (she goes to bed around 7pm)....that if we got a movie for the boys and the neighbor girl would just really have to sit there and watch the movie with the kids...that should be pretty easy. There are some good restaurants close by so we could start out going there and see how it works out and try to make it a monthly thing. Of course, with the way this winter has been with one illness after another, we all have been too sick to give it a try yet! Currently have a norovirus going thru the house. The ladies in the office at school said there were 12 kids out from vomiting today (Tyler is home for the 4th day in a row). Anyway, it sure isn't something we would be able to do without a ton of planning, but I think it would be a nice break for Brian & I to do something just us! I still have to ask my other neighbor what she pays neighbor girl when she has her sit for her kids. Well, busses are home, time to get snacks ready....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #3
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    ((((((Donna & Nick))))))

    Healing prayers are and will continue being said for Nick's wound to respond well to the Bactroban and oral antibiotics. No hospitalization!!! Is it possible to have a home health nurse set up an IV at Nick's residence? Do you do that in Canada? Last year, Jon came home with his PICC line, and he finished his IV antibiotic at home. Our nurse taught us how to flush the line, and use the compact computer = programming, etc. It's a cost saving measure for insurance companies, and it's better for the patient.

    How wonderful of Nick's doc to make a house call! Great Doc! Did he swab the wound for culture?

    Our home health nurse recommended Bactroban for Jon's infected ingrown toenail. I'm still waiting on our doc to write the script! She told me that it battles MRSA, and since Jon's toe came back positive for that in the hospital last year, I figured that it was a good idea to use it now. I'm trying to get a podiatrist out here to our home, but that's like getting an act through Congress. We used to have one, who visited regularly, but his group decided not to do house calls.

    Please keep us updated.

    I haven't had a chance to read your blog post. I'll get back to you after I do.

    ((((((Lisa))))))

    Oh no! Not another norovirus! Ack! You all can't seem to get a break in this department! School must be like being on a cruise ship! Perhaps the teachers need to start disinfecting their classrooms every hour! I'm so sorry that you are all suffering with another round of this bug.

    Have you seen the movie, "Date Night," with Tina Fey and Steve Carrell? It's hilarious. Rent it, then have a date night in your bedroom with popcorn and beverages. Put the kids to bed early, and have a date night at home watching a movie! And/or put the kids to bed early, order restaurant food delivered to your home, get out your good china and light some candles, put on some nice music, and have date night at home! It's not the same as going out and getting away, but it is an option for some "couple time" for you two. You can have a date night at home any time, spur of the moment, when you're in the mood.

    This is not to exclude your idea of actually leaving the house and your children for a couple of hours. I think that's a great idea, and would be healthy for both of you. Sometimes we get in a rut of being parents and providers and forget about our relationship as husband and wife. It's important to have that time together with just the two of you.

    Suggestion for your date night, especially the ones where you leave the house:

    Don't discuss the kids, the finances, or any of the other issues in your lives.
    Don't text or call home "just to make sure everything is all right," because that defeats the purpose of your time away.
    Do hold hands.
    Do share dessert.

    Sending healing prayers for your entire family to soon be over this bug and then no more bugs! And hoping that you and Brian can enjoy a date night at home or out on the town very soon.

    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.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    Choices? What are they? Are they like a "vacation?"

    Every morning, I make the choice to take a 2 mile walk in our neighborhood. It's the best thing I do for myself. It keeps me going.

    If Jon has a long morning sleep, Jim and I sometimes choose that opportunity to watch a movie, taking turns checking on Jon every 15 minutes. We munch on fresh scones (organic/refrigerated dough, not homemade) and sip our tea and coffee. We've perfected "What did I miss?" and the explanation to an art form, so we don't miss what is happening on screen.

    We choose to pause many times a day to watch the variety of birds bathing in Michael's waterfall and pond. Moments of serenity and Earthly bliss.

    But we also choose to be Jon's (and Michael's) caregivers, and we don't feel any loss of self as a result of that choice. When my boys were children and early teenagers, I finished my college degree and worked outside of the home, traveled, and enjoyed a social life. Don't ask me how I did that. Between constant hospitalizations for each of my boys, and serving their needs in every regard, I can only surmise that it must be that I was young.

    So, through their adult years, I was fortunate to be able to devote my life to their care, and I don't feel like I'm missing anything.

    Perhaps it is my age, and Jon's age, and all that we've been through, which contributes to my contentment as a caregiver. I believe that I was born to be a caregiver, and it comes naturally to me.

    I also know the powerful pain of loss, when caregiving is no longer needed. I know it well. That grief always informs my caregiving and my choices.

    But through it all, I made conscious choices to be myself. For example, when I was a single mom, on New Year's Eve, I celebrated with my sons until their bedtime. Then, I took a bubble bath by candle light, dressed up to the nines, dolled up my hair, put on makeup, fixed and consumed party snacks, and opened champagne at midnight, while watching the Times Square ball drop. I learned early on the importance of keeping myself entertained. We all need that for balance.

    Thanks again for a thought-provoking blog post, Donna!

    More prayers on their way for Nicholas! And 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.

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    Oh dear, dear friends.... thank you for your thoughts and experiences and for your friendship and support!!! Nick's boil or whatever it is burst today and there was a lot of drainage. So far so good and no contamination into the spinal cord. I'll keep you posted on how it goes. Nick is full of bravado with other people, but keen to express his worries to me. I feel it's fine and going in the right direction.
    Choices.... well, we don't always have many but it's fun to see what choices we can make when we think we have none. Rose, I love the mental image of you in the bath on NYE and dressing to the nines with champagne by yourself. Love it!!!!
    Lisa, I think your idea of the neighbour coming over for a couple of hours is a great one, but a movie together after Caitlin is in bed is a good stepping stone.
    I love you my friends!
    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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