my VAC bandage is going bad; help!

[pfcs49]

First of all, thank you all so, so much for your time and caring. I really love all of you.

This is what's happening now.

I got a new bed today: Masonair LS9500 Turn-Style Lateral Rotation Mattress. It costs almost $3,000. Medicare paid. It can automatically tilt you up to 40 degrees on your right side, left side and back again. My wife is ecstatic. Myself, not so much. Transfering from it to a chair is a disaster. It's like sitting on a 10 inch pile of squishy balloons and it occaisionally makes a noise like a little vacuum cleaner.

I have a visiting nurse who puts on my VAC dressing every morning. So far it's never lasted more than 12 hours, so she comes daily. I asked her how many hours per day I can sit in my chair. She said ask my PT. I asked my PT. He asked what my surgeon said. My surgeon didn't say anything. The PT suggested a wheelchair cushion with a hole in it where the wound is, like a sort of donut, and doing pressure relieving exercises in the chair.

Based on what I'm hearing and reading I have doubts about a VAC working for my sore.

But on the other hand, I don't want to stay in bed for weeks. I think it would drive me nuts.

So I'm sitting all day in a chair, paralyzed from the waist down with a stage 4 pressure ulcer completely penetrating the gluteus maximus above the ischial tuberosity and infected with MRSA. I've got a VAC dressing, which is off half the time anyway. When it's off my wound is often contaminated with feces. And no one seems concerned. My wife thinks a $3,000 mattress should surely fix anything and anyway I'll be walking again soon.

I'm confused. Am I fiddling while Rome burns? And why don't my health care providers read my wife the riot act?

John-you don't need me telling you, you're plate is pretty damn full!
I think you know that. Being on this forum will be a big help for you.

I learned early on from my experiences with my injury that it was absolutely necessary to be my own (informed) advocate. I won't go into all the medical horror stories that have been visited on me, but after the second or third, I knew I had to be my own advocate. Many medical professionals will tell you how well qualified they are to treat your condition, but be skeptical until you are well satisfied they are doing what is best and appropriate. You have an absolute right to have any questions or concerns answered and fully explained. You may need to be aggressively pro-active including possibly finding new providers. This is your life and it is important.

The bed sounds good. I know what you mean about dealing with a "balloon bed", but this too shall pass.

The caregivers not answering the "sit in the chair" question is vexing and intolerable. I know, once one has had flap surgery the protocol is ~10wks continuous Clinitron bed rest and (in my case) no more than 15* elevation. I'm a type A personality and I dealt with it. There's not a lot you can do lying flat, but I played my trumpet a lot, surfed the net, watched TV and did a lot of exercises with small dumbells-it was tolerable. I lived in the corner of our kitchen near a TV, a stereo, and had an iPad. The bedroom would be too secluded for me!
I hunch a qualified professional would keep you out of the chair. And there's that gorilla in the corner-your other side that shows on a scan.

The situation with the VAC sounds pretty sketchy. I don't suppose 8 days is soon enough to guage any results but I would sure demand some good feedback about at least how to get it working properly and if it is reasonable to expect it to work for you.

As previously mentioned, if you are incontinent, you probably require a foley for now.
And, as I mentioned before, before doing flap surgery a colostomy was highly recommended; I elected to get a permanent one and wouldn't go back! Being almost 20 yrs in a chair, I've gotten over any self consciousness about my body-what's simplest works best-bag that shit!!

And your wife? I know my wife (Julie) went through hell with my injury; poor Phil, poor Phil-what about Julie?? People expect the wife to dutifully support you, but she is gravely wounded as well. You could let her know that you sense this and you are sorry for it. And then have a good cry together.
You don't have to be tough to be resilient. She may be totally overwhelmed trying to be "strong". I know, when I rehabbed in 95 (w/Chris Reeve), she kept a journal that she shares with other women sometimes. She would be glad to be in a conversation supporting your wife in this strange new world. (PM me if interested)
You shouldn't have to go through this alone!

No. I don't think you are fiddling while Rome burns. You are in the early/mid stage of grief and acceptance-a long and valuable process! So is your mate. You may just be a little ahead of her now. And we all here know many of the powerful feelings that are swirling around you.
Time to take your power back; time to start problem-solving this overwhelming situation, one day at a time, one problem at a time. It will suck. It will test you to your roots. And as your actions generate results, you will feel better and better.
But I can tell you, as much as I hate this loss sometimes, if a bunch of people threw there shoes into a pile, I would take mine back.
Hang in there, ask for what you want, and if you get it, show your gratitude. Be gentle and be generous. (Listen to "help is on the way")

Wow! what a rant from a Volkswagen mechanic!

[johngoodman]

I just re-read the discharge instructions which were given to me this week by a very highly rated hospital. They include NOT ONE WORD about staying off the wound or bedrest. The visiting nurse who changes the VAC dressing has not said ONE WORD about staying off the wound or bedrest. My wife's belief is that bedrest is unnecessary. I've got an air matress, a gel wheelchair cushion, problem solved.

And I find that when I, a health care laymen, tell an MD or an RN "Are you sure that's correct, because I saw on the Internet etc" their eyes just roll.

I wonder if a hospital which specializes more in geriatric cases might be more competant to deal with this.

[Smashms]

John i have had 2 flap surgeries where you are talking about the second one finally took and worked, my suggestion would be absolutely no chair unless you are going to the doctor! And only limit it to a hour or so if possible. The wound vac as you are expierencing is very hard to keep there and intact. Before i had my second flap i had to fight with my WOCN to even try it. The reason why your dressing is only lasting a few hours is because you are sitting on it ideally the vac dressing should be changed every other day. If i remember correctly or maybe it was 2 x a week. For your wife well you have another issue on your hands she is in denial still. Being an L1 you should have enough mobility to do your own bowel program, get it started and i would also have your aide trained on proper slide board technique as well. Also start building your upper body strength so you can use your own strength to transfer with out the board

[Smashms]

I just re-read the discharge instructions which were given to me this week by a very highly rated hospital. They include NOT ONE WORD about staying off the wound or bedrest. The visiting nurse who changes the VAC dressing has not said ONE WORD about staying off the wound or bedrest. My wife's belief is that bedrest is unnecessary. I've got an air matress, a gel wheelchair cushion, problem solved.

And I find that when I, a health care laymen, tell an MD or an RN "Are you sure that's correct, because I saw on the Internet etc" their eyes just roll.

I wonder if a hospital which specializes more in geriatric cases might be more competant to deal with this.

you need a hospital that treats and deals with SCI not geriatric cases. A major trauma center would be a good place to start as they see a bunch of these cases every year. As well as a teaching hospital. Where are you located maybe we can suggest a place near you. I would also ask to see the agencies WOCN as well

[Smashms]

Now thinking about it you may even benefit from seeing a plastic surgeon who specializes in doing pressure sore flap surgeries. Yes there are such doctors and this is all they do. They are the experts in treating pressure sores.

[AnnieM]

John, not a hospital that deals in geriatric cases, they are less likely to give you what you need for your SCI. After all, you're an old man, we'll just stick you in a wheelchair. They specialize in problems associated with aging, not spinal injuries. Go for a facility that has experience treating the problems associated with SCI

[johngoodman]

Thank you. I'm going to try to research trauma centers. But I would think they deal more with broken heads, not butt sores. The geriatric people must see pressure ulcers 24/7.

[johngoodman]

By the way when my VAC dressing was changed today the visiting nurse noticed significant areas of yellow slough, which were not there yesterday. This is 72 hours after hospital discharge where I had a complete surgical debridment which went to the bone.

What does this mean????

[Smashms]

Means there is either i fection or you may need to be debrieded again as they didn't get all of it out the first time. Was the surgeon notified? If so what did he say? If not why wasn't he notified?

[Smashms]

Thank you. I'm going to try to research trauma centers. But I would think they deal more with broken heads, not butt sores. The geriatric people must see pressure ulcers 24/7.

John i say trauma centers because they deal with SCI which is who has more experience dealing with pressure sores as it is a complication of having paralysis. Again where do you live we may be able to assist you in finding someplace that specializes or would have more experience in SCI or spinal cord injury. Not all geriatric people get pressure sores by the way my grandmother is 88 and has never had one! In fact they are rarely unless the person is bedbound and not being taken care of properly seen in geriatric centers.