Robbie is in ICU with an infection

[SharonD]

Originally Posted by wheeliecoach

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.

[cjhawk38]

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.

[SharonD]

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.

[thehipcrip]

Originally Posted by SharonD

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.

[SharonD]

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