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Thread: Robbie is in ICU with an infection

  1. #121
    It's not good. When Michaela was on the stupid thing the wound nurse told us the canister would only need to be changed every two or three weeks. We only changed it once.

    Have you looked at the wound? Does it look clean or is there some yellow sluff? Like I said before the wound vac did more harm then good so she was taken off it and I just did wet to dry dressing changes morning and night.

  2. #122
    Are you able to take a day off work to regroup and recharge? It sounds as if you're running on empty and everything can seem insurmountable if you have no energy. Thank heavens for singing in the shower! Robbie has been through so much but his buoyant spirit still finds lighthearted moments. What a gift!

  3. #123
    Quote Originally Posted by cjhawk38 View Post
    It's not good. When Michaela was on the stupid thing the wound nurse told us the canister would only need to be changed every two or three weeks. We only changed it once.

    Have you looked at the wound? Does it look clean or is there some yellow sluff? Like I said before the wound vac did more harm then good so she was taken off it and I just did wet to dry dressing changes morning and night.
    I think the wound actually looks good, at least the skin around it looks clean and I think its getting smaller. But I can see white stuff inside him, Ive been told thats the infection which the wound vac is sucking out.

    Our issue isnt changing the canister, I can do that. Its the actual sponge and dressing on the wound with the tube coming out, it never works when I do it and the nurse comes daily now (we were told she would only need to come 2x week) well once a day isnt even enough.

    Its 3am, the alarm has been going off for hours, Ive taken the vac off and put a dry dressing on for now. Me and Rob having tea together!

  4. #124
    Quote Originally Posted by truly View Post
    Are you able to take a day off work to regroup and recharge? It sounds as if you're running on empty and everything can seem insurmountable if you have no energy. Thank heavens for singing in the shower! Robbie has been through so much but his buoyant spirit still finds lighthearted moments. What a gift!
    Yes, you're right, everything is more difficult when we dont get our sleep. Ive taken so much time off from work, Im surprised I still have a job honestly. I rely on my coworkers to fill in for me all the time. Thats gonna get old!

  5. #125
    Senior Member wheeliecoach's Avatar
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    Quote Originally Posted by SharonD View Post
    Its 3am, the alarm has been going off for hours, Ive taken the vac off and put a dry dressing on for now. Me and Rob having tea together!
    Ugh I remember that stupid alarm. We ended up sleeping in the recliner chairs because that position guaranteed that we would get at least 2 hours of interrupted sleep before the alarm went off.

    We ended up (for the whopping 10 days we had it before we realized it was playing vampire) having the sponge bridged...where they put the sponge in the wound as normal and then snaked it to a place where it was not in the way of laying down, or sitting (like upper hip, lower side). That worked somewhat because then the tube was not kinked. See if that is something they can do (if they have not done that already). Good to hear you think it is looking better and smaller...wishing you continued luck with that thing!
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  6. #126
    Quote Originally Posted by wheeliecoach View Post
    We ended up (for the whopping 10 days we had it before we realized it was playing vampire) having the sponge bridged...where they put the sponge in the wound as normal and then snaked it to a place where it was not in the way of laying down, or sitting (like upper hip, lower side). That worked somewhat because then the tube was not kinked. See if that is something they can do (if they have not done that already). Good to hear you think it is looking better and smaller...wishing you continued luck with that thing!
    Yup, tried the snake thing, that positioning didnt work either...thanks! Lab work up today, that will tell us some things, we better be moving in the right direction after all of this.

  7. #127
    Sounds like the wound care nurse isn't using enough of that tape. Our nurse sent us home with extra sheets of it but she put so much on the only time it came lose was when the other nurse changed it but since I had extra sheets of the tape I got it to stay. Is the canister sitting up when he sleeps? You can use one of those command hooks over is bed. You said the other day that he got the hose caught in his tire you know that you can pull all the slack out and hook the excess hose in that velcro under the flap of the carrying case. (The link I posted of Michaela at Disney a few post back shows that)

    I've been where you are as a single parent trying to take care of your kid and work too. When my oldest was in high school she was in the hospital every other month for 2 years and when I thought that was over my youngest was then in and out every month and a half for almost 2 years. I have 2 daughters with spina bifida and fortunately for me I worked for the Government and they offered early out buyouts so I retired. Now only 17 months later I don't know how I did it. Wish I knew how to tell you how to rest and take care of yourself but I never figured it out myself. We just go into mom mode and do everything.

  8. #128
    Thanks, I will look at the pic again...my brain isnt working, so exhausted!

    So many friends ask how they can help but Robbie doesnt want anybody else caring for him but me and the nurse, I dont blame him. I tell friends to make him food, with protein or get him a smoothie. Its all they can do for now. Some day I will hit the lottery or meet my knight in shining armor and life will be easier.

  9. #129
    Quote Originally Posted by SharonD View Post
    Thanks, I will look at the pic again...my brain isnt working, so exhausted!

    So many friends ask how they can help but Robbie doesnt want anybody else caring for him but me and the nurse, I dont blame him. I tell friends to make him food, with protein or get him a smoothie. Its all they can do for now. Some day I will hit the lottery or meet my knight in shining armor and life will be easier.
    Every time I read a post from you, Sharon, I just want to give you a big hug. You are the definition of "Awesome Mom" personified.

    Even though the friends who offered to help you can't do anything directly related to Robbie's care, how about asking them to do other stuff like helping out with laundry, running the vacuum, dusting or other light housework, running errands, etc.? I'm sure they'd be happy to help out with anything that allows you to take better care of yourself and, in turn, continue giving Robbie the care and attention he deserves.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  10. #130
    hipcrip, I can feel the hug and it really helps....thank you!!!!

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