I Spoke too Soon... :(

Hi Everyone,
Sadly, Cyndi has not been doing as well as we originally thought. Things were looking up when our Aunt and Uncle were here...and continued TH, FRI, SAT while our brother was here. I got in Saturday night and all looked well. Cyndi amazed me with her attitude and remarkable ability to walk....She was walking really well! Sadly things started to quickly digress. The infection returned bringing high fever and swelling to the incisions. They tried bedside irrigation but to no avail...She had to go back into the OR yesterday.

The good news was that the infection had not spread into the muscle, and that the muscle looked strong and the hardware was not protruding through it anywhere. The top layer however had died and they had to cut some skin away. I was told today that part of the transplanted tissue had also died, and thus had to be removed as well. They replaced her drains with two new ones and put in a vac. (sort of like a vacuum) It is a special draining machine that basically plugs the open wound with a sponge type material slowly extracting the liquid that it pulls from the surrounding tissue. The idea is that eventually it will help to pull the skin together. (forgive me if there is a better way to describe this...??)

Now we play the waiting game. If it will or will not work is somewhat questionable. If the infection comes back they may try more clean outs in the O.R... If all attempts fail, the worst case scenario would be to remove the hardware then clear the infection only to have to put it back in at a later date. Everyone is doing their best to avoid that...but it is sadly a possibility.
She had been without a fever all day..but a low grade fever has just come back. :( Please continue to send your good thoughts and prayers as she continues to fight this very long battle. Thanks again for all the support!! Teri

Up and Around...

"Uncomfortable, but doing great!" from any perspective but her own anyway. (All things considered) She is walking about well. Other than the pain, it would seem as though her walking abilities have not digressed much....GREAT news. The infection is to be managed with IV antibiotics for the next 6-8 weeks. Not much else to report for now.

Recovery

Hi All,
Cyndi is in Recovery tonight after a 6+ hour surgery. She is heavily sedated and on a ventilator. They hope to be able to remove the ventilator and move her to a room in the morning. Her Doctors were relieved to find that the infection was not as bad as they had anticipated. They did however have to remove some of the hardware. Our Aunt and Uncle were told that the hardware removed was not "load bearing" and thus she should be able to walk. Not a lot of detail on the plastic surgery portion of the surgery other than that the procedure went well. So we are optimistic that some blood flow in the area will speed up the healing process. Guess we wait and see. Once again, Time will tell.

Delay....

Hi Everyone, Latest news is that the surgery will be today, Tuesday July 1st. We appreciate your continued thoughts and prayers. Aunt Nancy & Uncle Charlie are in from Boston and are with her. Will update once we know more.

Just wanted to give you a bit of an update on Cyndi's condition.  Last Friday(6/20) Cyndi started to experience a bit of discomfort and pain.  As she has had so much pain in the past she just chalked it up to the process of things and left it at that.  Over the weekend her pain intensified and would not go away.  When the visiting nurse, a wound care specialist, arrived Tuesday she assured her that her site was not infected and there was nothing wrong.  Well, I guess looks can be deceiving because when she went for her Thursday check up Dr. Boland said that her wound was infected and that she needed to be admitted to the hospital immediately.  He also said that the cause of the infection was damage of the skin and tissue due to radiation and was in no way caused by her(very relieving for her to hear.)

After many hours of poking, and waiting, she finally got a room at 1am. By Friday, it was confirmed that she would need an operation to clean out the site, re-close it with a different method by a plastic surgeon, and hope for a positive outcome.  Her blood clotting levels were too low to operate immediately.   So, after a full, long weekend of exams, antibiotics, pain, and transfusions----she will be operated on Monday.  As you can probably guess, her spirits are extraordinarily love and could use as much support as possible.

Youch!

Hi Hi Hi
My biggest apologies for taking so long to post something up on here! I have been meaning to do so since the surgery, but haven't really forced myself to do it. A ton has happened since the surgery, yet at the same time, I feel as if I am standing still in time.
As you have read, the surgery was a "success." Ok, so it went well- Although I wish I never had to put my family through waiting 14 hours while I was on the table (I couldn't imagine what they were going through during that time.)
I would go into real detail of what I remember after the surgery, but I will spare you the awful details and just give you a run-down. I woke up a day earlier than I was "supposed" to, with a breathing tube in my mouth, which was scary- but not as scary as not being able to see because my eyes were swollen shut....yeah, that sucked, but after the nurse realized I was up, things settled down for a second or so. Then the pain set in, the next week is a COMPLETE blurr...I remember wishing someone would put me out of my misery at one point, I was super swollen (arms and legs) from being in that position all that time and couldn't lift my arms and legs because they were so heavy- I was told that you couldn't recognize me if your life depended on it. Lovely. I remember begging my wonderful sister not to leave my side and she was a trooper while they tried everything in the book to make me comfortable. SO---blah, blah, blah. An awful week went by with hallucinations and such with some wonderful friends by my side (a million thanks)...At least I can laugh now at the stories they tell me.....anyway.....
I stayed in the hospital for 3weeks following surgery and then they sent me home. I was denied a rehab facility which was complete BS, because my insurance said "I was doing too well too quickly" and didn't need that kind of care. Total BS.
Since I have been home I have had a nurse coming to the house twice a week, PT coming to the house 3times a week and that is it for now. I have dealt with quite an array of emotions from full throttle depression to, well, I guess this point where I am now- very impatient. I am getting better every day, just not at the speed I would like. It doesn't seem like my body- but I am trying to get to know it and work with it to recover as best I can.
I am walking around the house without the walker, but cannot do stairs yet. When I go outside, I need the walker. I was going to the end of my street for a while, now I can make it around the block. I guess everyone around me is happy with my progress, but I am not really sharing that excitement yet. I am still very frustrated, and occasionally have my pity party, but they are few and far between I guess.
The words I have been hearing OVER AND OVER again, are "Time, it is just going to take Time" or "Time will tell." You see, with this ordeal- since it is pretty rare- no one really has any answers, it is really a matter of , "we will see." You can imagine how much I like that!
Stitches are out- scar looks good, and long....the steroid weight is coming off (also not as fast as I would like) but the facts of the matter are that, I am walking, and there is room for rehab and recovery- so I really should not be complaining. The situation as we all know, could have been much worse.
I go back to the hospital tomorrow for a Doppler test to make sure my blood clots are gone, and then next Thursday I go back for xrays and an apt with the man himself, Dr Boland. I haven't seen him since I was in the hospital, so I am hoping to surprise him with my progress when I see him, that would be the type of validation, or sense of accomplishment that I need right now. And then hopefully from there, I can go to outpatient PT, when the real progress starts! SO, I will do my best to check in after my apt next week. Thanks for ALL of your thoughts, prayers, and well wishes- you have no idea what they all mean to me. When I feel like I am officially "spent" I look at my cards, emails, etc and I convince myself that if I give up, I am letting a lot of people down including my children- whom I miss terribly and CAN NOT wait to be able to be a mother again without supervision! Talk about motivation.....
Thank you all,
Much Love and MANY thanks for everything,
Cyndi
PS- Yeah, that picture above is me- rebuilt- I have no idea really what I am looking at yet, but will get all the answers next week when I see the doc. (I mean, other than rods, screws, and pins!!!)

Coming Along Well

Hi All~
Cyndi is up and about. Amazing!! She is taking a few steps with her walker and feeling a ton better. We might here from her soon. :)