My surgery was successful and all went as predicted. I was in ICU from Monday PM until Fri AM. They kept me asleep until Wednesday. Someone must have told me but I was too doped up to understand how to call the nurse or press the morphine button. Some time Wed I found out that I had been pressing the Oygen monitor on my finger thinking that it was for pain relief. I was finally coherent enough to ask for the nurse's call button. That is when I found out that the pain pump was right there in the sheets and the call button was on the pillow above my head. My daughter-in-law told me they had to lightly restrian my hands because I was trying to get to my face. I remember a nurse telling me that I was going to get infected if I kept trying to hurt myself. From the fog I remember thinking that he was being mean and yelling but now I realize that I was too doped up and in pain to communicate that I needed something for the pain. I let the doctors know that I could not find the pain pump until the third day and they agree that there should be a large legible poster on the wall showing how to use it.
Adding to my distress and confusion was the non-functioning clock on the wall. It took a while for me to realize that time really was passing and I was not completly hallucinating.
Funny moment: The 5 year old grandson tried to follow his mother from the waiting area into ICU down the hall. When a nurse told him he could not come into the area, he told her he was 16. I guess he knew that you had to be 14 to visit patients so he exagerated a little to be safe.
The nursing care was excellent and I am now home recovering. Home health nurse came out today and will be back Friday. She said that I will be visited be an occupational therapist and a physical therapist. Before I left the hospital a physical therapist told me how to get up and down the stairs on my backside. I remembered what she said about starting to go down the stairs but when I got up the stairs easily, I forgot how she said to stand up and turn aroud to go in the hall. Somehow my dear one was able to help me but it was not easy for him. I had thought that I could stay downstairs for part of the day but found out that the walker is too wide to get into the powder room. The equipment company is sending out a narrower one tomorrow.
I had a wonderful visit Sunday evening from another OCF member. "Splenda" who lives on the North Shore came with her husband.
Malka

Malka, I can't believe that you are home already! I am going to want to hear all about every single thing. I'm pleased that you haven't had any significant problems, though I am really annoyed that the hospital would allow you to not know how to call for help, and that you had a non-functional clock. arghhhh!! That's very disorientating to a patient. Anyway, the big issues seem to be behind you. Can you tell anything about how your jaw is going to look? and function? Is it wired shut? How about your leg. what is the therapy schedule for that? When is it predicted to be back to normal. Splenda did call to give me your good report. She was delighted to see you up and doing so well. Write more when you feel like it. XO

Glad to hear you are home! I find I heal much faster if I am at home rather than in hospital, plus the conditions for serious infections don't exist at home like they do in hospital!

Malka:

Ive been wondering how you were doing. Glad you are home and feeling up to posting. Hope you get stronger and feel alittle better everyday.

Pete: you are 100% correct. My husband likes to quote a Spanish saying:"the wine may be bitter, but at least it's my wine."
The machines for vital signs at TU must have been programmed by the same person who writes the awful cell phone rings. They chirped and binged 24 hr a day. the nursing staff were wonderfully efficient and cheerful but those machines were awful.

Colleeen: I had no jaw wiring, just a nasal tube for feeding for a few days and then a very soft diet. Now that I am home my family is feeding me delicious food on my schedule. For a while it took a great deal of energy just to finish off a yougurt or jello.
Even swollen it is very apparent that my chin is back to the center of my face. The plastic surgeon said it should take 6 mounths to a year to heal. I am wearing a boot on the leg and using a walker. Tuesday I will see both doctors and hopefully will get rid of the Frankenstein tracks. I think that the boot will be on for a few weeks. I am taking the "Scarlet" approach - worry about that tomorrow.

I was surprised this time around because my ICU seemed to be one of two well-lit private rooms instead of a big one filled with everyone's machines in alarm that I had last time. Also, they weren't hooking up O2/pulse alarms like they did last time (Could that be a result of the yellow wristband I printed up at home that said "Patient has Bradycardia -- Adjust alarm thresholds accordingly" ?) I had earplugs in my gown pocket but they must have changed it because I never saw them again.

And I complain about the cold!!

Why didn't they ever ask you "how's the pain?"

I hope your recovery is fast.

The problem wasn't with the nursing staff. They were wonderful. In ICU one nurse took care of two patients. Each in a separate room. Much of the time they were in and out of the room but I was not coherrent enough to express my needs. Then when I found the pump I was additinally incoherent from that. I had prepared a list of comunication needs, had a dry erase board I never used and wrote most messages on index cards. I have terrible hand writting(once accused of learning to write in the dark) and some of what I tried to communicate did not make much sense.

Sadly, I suspect they become quickly used to some patients not making any sense coming out of the fogs, to say nothing of those of us who can't even talk. I find that sometimes drawing a P on my forehead with a finger and then holding up a couple of fingers gets the message across.

Learned to write in the dark...that's cleaver. Man we have so many cleaver people on this site. That's a great benefit to everyone's healing IMO.

'Twas a Newcomb professor who accused me of learning to write in the dark. My husband once saw me signing checks and said "I gave you my name and that's what you did with it??"
Another instructor told me my spelling was subnormal. I would have said abnormal. When I was in school there were no learning disabled. I never understood when teachers would say if you don't know a word, look it up in the dictionary. I knew the words, all the Latin, Greek, Old English, Old French, Germanic roots, prefixes and suffixes and their meaning better than any of the other students and scored in the top 3% in College Boards. I just sometimes write letters in the wrong sequence and could never spell out loud. I also have the same problem with numbers. Differential calculus was much easier for me than simple multiplication tables. I still have trouble remembering 6x7 and 6x8. My older sister told me she tried to help me and I never could get those.
One of my son's tells me that my singing is against the Geneva Conventions and the boys would tell their friends "Watch out, my Mom will sing at you." That was a worse threat than "my Dad will get your Dad."

BUT: As one little boy I know said as he pointed upward "Don't you know that no one is perfect except Him?"

Most important is to have a sense of humor about ourselves and our situation, to have the ability to see that even though we have pain and very real problems there is help - if not today for ourselves then hopefuly someday for others, to acknowledge that there is a reason for everything even though we don't understand or like why things happen. I believe that we must have a deep faith in the Creator who knows what He is doing and who does listen to our pleas even though we don't always understand His answers.

Malka,

I haven't been around for a few days, but I was thinking of you the whole time. I got a short report from Colleen via email.

I am so sorry to hear about the awful ordeal you went through in the hospital. There's no excuse for what happened.

I'm glad your home and on the road to recovery. I hope you are feeling much better by the time you read this post.

Jerry

On the road to better,
We saw both surgeons yesterday and I will go back to the Plastic surgeon next week and the ENT the week after. So far I still have the Frankenstein stiches on my face and neck, am using a walker and eating only soft foods. The plastic surgeon told me to wrap an Ace bandage around my face to reduce the swelling. I asked him "like a nun?" and he said "yes." My d-i-l brought one over this afternoon and I can't figure it out. Tomorrow I see the Prothodontist and will ask him.
I conquored the stairs going both up and down sitting. When I get upstairs I just roll over on my side and get up on the knee from the good leg. To go down, I roll to the top of the stairs on my computer chair, someone holds it and I ease down to my knee, sit down and bump down the stairs. I really don't want to do this more than once a day as I am not an exercise person and it is tiring. Also, I need help at the top and someone has to bring the walker up and down for me.
I now do not need the boot 24 hr, mostly for walking. I am afraid to sleep with it off but am enjoying the "freedom" from it during the time when I am not walking. The Plastic Surgeon told me to keep the leg elevated as much as possible and OKed putting on a low quarter sock. The problem with that is that the velcro adjustments stick to it. oh, well - "you have to suffer to be beautiful."

Sounds great, relatively speaking of course.

I liked your Frankensetin comment....

After my radical neck dissection my kids called me Frankendaddy.

Keep those inflatable booties powered up when you can -- The leg where they harvested the free flap material has a lot of fluid buildup (So far, they've taken ten of the 60cc syringes-full out of there!)

Pete,
The boot is a stiff one piece with molded foot and sides. The edema is in my foot and seems to have gone down a little. Yesterday the Dr.told me I didn't need it on 24 hr and should try to keep the leg elevated as much as possible. I left a question to his nurse to find out if a regular stiff ankle brace and a croc would suffice. It seems to me that if all I am doing is going a few yards to the bath room with the walker that should be sufficient to keep the leg straight with the ankle stiff. I think that some of the edema in the foot is due to the pressure from the tightness of the closures of the boot on my foot.

Advice please
Has anyone been told to wrap an ace bandage around their face to reduce swelling?
I asked about masssage to reduce it and the dr.recommended this. I can not figure out how to do it without choking myself. I took the bandage with me to the prothodontist this morning and he wasn't sure how to do it. I thought that perhaps I need to cut it on the length because at 3in. it is too wide for under my jaw but it may unravel. If I double it over there will be a problem with the velcro closing sticking to itself. The only other thing I can figure out is to loop it around and tie it on top of my head like a cartoon character with the mumps or a tooth ache.

Malka,

To help with my swelling I would use a one of those...Darn, I can't remember the name...they're like a hot water bottle but they are round with a screw cap on top...it's nice and soft and it would form to my face and neck areas. I would fill it up with ice and cold water then at bed time I used hot water in it. It worked great. I bought it at CVS.

Thanks Ray. I will ask about heat/cold. I think the dr. wants pressure, not heat or cold.

Malka,

Have you tried calling the nursing staff at the doctor's office?

My swelling is from the radiation txs and I can usually keep it under control with a heated water bottle...it sure feels good.

Just a word of warning...don't let anyone who is a beneficiary in your will wrap a tensor around your neck!!

Be careful out there...

(And David...I killed myself laughing listening to your description of what she should use to reduce the swelling. You sounded VERY much like you were having a "Senior Moment". Have you managed to recall the name of the item yet?)

Donna

Not recommended, I think, for early stages (some swelling after surgery being normal, of course) however, might check with care team about lymphedema massage to move the fluid on it's way through the lymph system.

I don't think this is fluid as the dr. said no to massage. It seems to be excess tissue from the free flap.

Have they mentioned the possibility of having to "de-bulk" the tissue from the flap? I understand that sometimes that is necessary. I don't think it is painful, since there is no feeling in that tissue, as I understand it. I guess it would be like mini-liposuction.

You mentioned your Frankenstein tracks on your face....I presume you mean that you have a facial incision....or neck?

I hope things have continued to progress nicely! XO

Dr Haakenslash told me that they try to err on the side of too much flap tissue than too little because it's much easier to take the excess away than to add more.

I am curious what they will now do with the area of my oral tongue where the flap partially failed, due to inadequate circulation, once all the tissues have granulated, presuming it doesn't fill completely in by itself (being thigh tissue, how would it know when to stop?).

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

I sure do have a lot of neck scarring from the incisions; two sets in front and a new set on the side to reach BOT.

BTW, one of the objectives of my previous lymphedema massage was to move fluids, but the other was to "mobilize" the neck scarring from the surgery and radiation so my head can move more freely up-down and side-side.

Malka,
It was good to talk to you the other night! You made my
day like I told you! Please keep moving your head and neck
around to keep them mobile. You know that ace bandage might
do more damage than good-just a thought, but I was told it could
be dangerous if it was fluid. Might ask your doctor if it is fluid
or just the flap. I was told my flap would shrink with time. Maybe it has a little or maybe I just am a little more used to the "new
normal". I hope that it works out for you.

But-I just wanted to let you know,today is my 2 year anniversary
(ugh-doesn't sound like the right word to use/) but I had
my surgery for 16 and 1/2 hours 2 years ago today!! Just holding
my breath and realizing how lucky I am to be here today.
It just seems like yesterday. What an ordeal!!!
I am thinking of you. Get interested in a good book or movie.
I know time goes so slowly when you just look out the window.
I have so many bluebirds!! I never knew.
Take care and I hope to hear from you soon.
Debbie

Results of visit to both ENT and Plastic Surgeon:

All stiches out - no more Frankenstein look
OK to chew - goodby soft food
No need for supprt of leg - the boot goes to the 10 yr old grandson for a costume
Goodby walker - Ok to go up and down stairs like a grown-up on my feet instead of like a baby on my bottom

Malka..soso glad for your good report! You are a lucky girl to go through such a big surgery without more difficulties than you have had. I'm happy for you! It should be pretty smooth sailing now...just gotta keep healing and getting stronger. YAY! OX

Whoopee Malka,
You're on the way now. Throw that walker out the door. You are really making good time. It took me 6 months to get to go back to work. I was not so strong when I went back either.
Keep up the good work. I wish I could chew with you, but I don't
want to go through it again. I'm a scardey cat. You are brave.
You can now get a face lift and botox and be a movie star!!
Just think!!

Hang in there-Way to go girl!
Peace to you,
Debbie