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Friday, December 17, 2010

Feeling Betrayed

I was at wound care yesterday. I am back to my healing ways--sort of. The good news first: I am pretty much down to a single wound. The wound on my left hip that I developed in the hospital will be healed within a week to ten days. It is very small, half the size of a dime, and obviously almost healed. The other wound I developed on my ass is also healed. This was never a serious issue but could have been. The bad news: the wound on my right, the big problem from the get go is, well, a real problem. And truth be told it was always the major problem. It was a stage four wound, deep, nasty, and grossly infected when discovered. It is slowly getting smaller and has filled in--I have great granulation so I am told. Frankly I think it looks like chop meat--non infected lovely fresh tissue an MD would say. But that is not the issue. I have tunneling or undermining that is not getting any better. This is a huge problem. The MD changed the way we are doing the wound vacuum and hope in three weeks the undermining/tunneling is substantially better. If not, it is flap surgery for me. This surgery is a measure of last resort. Frankly the odds of me healing, that is the undermining/tunneling being better in three weeks are nil. I suspect the three week wait is less about healing and more about scheduling--going to the hospital for surgery between Thanksgiving and Christmas is a very bad idea. Shoot, going to the hospital for any reason between now and New Year day is a bad idea. I speak from experience. Staff does not want to be there, patients do not want to be there or conversely sad people that have no family want to be there. It is a bizarre mix of staff and patients. If humanly possible do not get involved.

I have thought of little else aside from my wound in the last 24 hours. I feel as though I have somehow failed or my body has failed to heal. I have been a model of "patient compliance" and know I am not to blame. I do not sit up often, my sitting is in fact severely limited. I try to bend my hips as little as possible in fact. None of this has done much good. I am worried--deeply worried. Flap surgery I see as a measure of last resort. If it fails I am in deep trouble. I worry not about the routine things that go wrong with surgery--I accept that risk as beyond my control. My worries are what happens if flap surgery fails. At that point I am at the end of the road--meaning I will never sit normally again. It will be just me and these four walls. That will be a hard life for sure. I have already lost the Fall, now the winter, and potentially much more. Of course I know flap surgery is usually successful and I will seek out a top notch plastic surgeon that does this all the time in New York City. The reality is I have no significant risk factors that could hurt me--I am not diabetic, have no circulatory problems nor am I obese. If anything I am too skinny--I weigh a whopping 140 pounds. I am even trying to gain weight without any luck (no more lite beer in the house).

What do I do when worried as I obviously am? Well, I read too much. I have been researching flap surgery and delving into growth attenuation again. The Hastings Center Report I read and wrote about has me wired. I am growing skeptical of the conclusions reached. I wonder what a rigorous informed consent would involve for those parents that would consider such a radical course of treatment that growth attenuation is. My idea of informed consent would render it virtually impossible to go through with growth attenuation. Frankly I don't trust large institutions such as Seattle Children's Hospital. I also have no faith in ethics committees--the sort of committee that already allowed growth attenuation to be performed, illegally as it turned out. Not a minor mistake in my estimation. I am also preparing for my son's return from college (that means ordering huge quantities of food he consumes). Now this makes my heart soar! I miss him very much but know he is learning and becoming an adult. His development is amazing and I am very much the proud poppa! Of course I also know by the time he returns to college for the Spring term I will be happy to see him go. It will not be easy for him or me to coexist. He is nocturnal and I am not. He is 18 and I am, well, old! I have household rules and he rebels--as he should. I know I did and made my parents crazy. I guess the apple does not fall far from the tree.

9 comments:

Eric said...

I have two suggestions: one is a reiteration to look into the possibility of using insulin growth factor 1. You can read some very good (mouse) research here: http://www.ncbi.nlm.nih.gov/pubmed/17173558.
The key is using it together with the binding protein.
Secondly to help weight gain try the following two recommendations:
1. weight gainer formula powders from the body building world. We'll have you sporting a beer belly in no time.
2. Pancreatic enzymes (solgar has a quadruple strength one that i give to Segev, every meal)

Worrying over things about which you have no control whatsoever: I do it too, constantly, about myself and of course my children. Now also my mother...don't let it nestle in your brain too much though.

ginger said...

William,
Hospitals are often a breeding ground for carelessness and bacteria. Your weight is way too low. Is depression part of this cause? Have the people who have been helping you 100% sanitary? Do you know the exact cause of your initial wounds?
I'd be asking questions.
Take care

ginger said...

William,
I always feel like a mother to you.
As people become older and/or less active, they tend to dehydrate. After using tap water in my vaporizer for when weather is dry, found that the vaporizer clogged with Dirt! I switched to distilled water or whatever bottled water was cheaper. No more dirty, clogged vaporizer.
Have you tried drinking soy? It is loaded with good nutrients. You're not outdoors in the sun often enough. You most likely need calcium with Vitamin D to compensate. Also a good multi-vitamin per day.
You could try this also for a few days: take note of what your hands touch and what your skin touches.
I buy the antibacterial toweletts (about one dollar) for surfaces my hands touch frequently. I've found that for around home a comfortable white t-shirt and robe that can be bleached and changed frequently has kept me to almost zero infections be it a scratch or whatever. The same with any bedding that touches my skin.
About a year ago my dentist was contemplating gum surgery. (as people age, gums tend to recede) I upped Vitamin C in my diet and a daily Vitamin C and purchased a toothbrush sanitizer for about ten dollars. My dentist says I no longer need gum surgery. It was bacteria!
When my family comes over, they have learned to keep things clean, clean up after themselves.
Visits are happier.
I am older than you and remember as a child going fishing with my parents. The stream water was so clean we could see the rocks and fish. No longer! We are dealing with dirt and pollution.
You'll make it.

william Peace said...

Eric, Sad to saw your first suggestion was dismissed instantly by the MDs I have dealt with. It was something i could pursue on my own if I wished. I have heard so many bad stories about supplements that I worry about using them. I will look your suggestion and drink real beer rather than american lite beer.
Ginger, I am not happy for sure but far from depressed. I am naturally thin as is almost everyone in my family. I did not even break a 100 lbs until I was well into my 20s. My son is 6'3' and weighs 140 at most. I estimate I have lost five pound or so. I am sitting slightly more and learning how to cook meals that can be made quickly--my preference is for roasting things and getting multiple meals with no waste. I am adapting. and feel free to mother me. I am touched by your care and delighted you read my writing. I think there is much older people with a disability can teach to others--I also have the utmost respect for older people with disability as you lived and came of age well before the ADA existed.

ginger said...

William,
Has your thyroid been checked?
Start eating and packing on some pounds so you'll have more than bone to sit on!
That is a contributing factor to your not healing!
Common sense.

ginger said...

And take vitamins also. You don't want infection to get into your bones.
Try putting some girlie pictures up on your walls. That should increase you appetite and outlook on life.

ginger said...

William,
Grandma Ginger again!
I didn't get my degrees from MIT for jack.
The average total concentration span consists of 4 to 5 sentences in conversational tones.
The history of the Byzantine Empire was lengthy but even that was condensed.

william Peace said...

Grandma Ginger, My thyroid is fine (I thought of that too). And yes I take a multivitamin daily. I agree more weight would help. Having my son will surely get me eating more as my fridge is stocked to busting. He consumes massive amounts of food as I did at his age. Not sure about the girlie pictures! I prefer the real thing over images! This reminds me of when I was a sick boy and in the hospital. My neurologist would round up the pretty medical students and have them visit me. Wow, did that ever boost my spirits!

Sketching Girl said...

I hope your wounds manage to heal soon, I never knew bed/pressure sores could be so bad. I looked them up on Wikipedia, and was shocked how bad they can get! And yours was stage 4? That matches the pictures on the Wikipedia article too!

The link is here, but DON'T click if you're at all squeamish!

http://en.wikipedia.org/wiki/Bed_sores

It is definitely worth checking yourself regularly for these sores appearing. I am assuming that as your original wound went unnoticed for so long, and with you having paralysis, that you don't feel any pain with it? At least I hope you don't!

Best Of Luck and Well Wishes for fast healing!