I really need some advise with regards to pectoralis flaps if anyone knows of them. As some of you know Steve had a reconstruction done on Monday which failed. They did a 2nd surgery to clear the blood supply that was blocked but it was also unsuccessful and the leg bone that they grafted has died. Today they did a 3rd surgery and have now removed all bone and all metal plate. They have harvested his pec muscle, moving it up to cover his neck and the veins exposed and put a skin graft on. But that is it. The ORN has done such severe damage to his jaw bone that the best course of action at this stage is just to leave him without any jawbone or support of any kind on the left side. The main priority for the medical staff is to stabilise him, get him to heal and then work from there with what ever the next step will be.

What I'm wondering is what kind of issues is this likely to cause us. I have no doubt that trying to eat and speak with no left jawbone is going to be difficult. Does anyone know of this or anyone that has had this done and if so how has it impacted them.

Steve is still heavily sedated in ICU. He has been asleep for over 48 hours and is slowly starting to wake. They have him hooked up to all kinds of things and he is still on his breathing tubes as they don't want to take them out until they know he will not need a 4th surgery. He has so far had 19.5 hours of surgery in the last 4 days so they are being extremely cautious with him as the doctor's, like me, just want to get him back to a state where he is off the intensive care list. Any ideas or advise please. I want to be able to help him with this. He doesn't fully know what has been done yet so if I can find out how it works, what impacts likely etc I may be able to help guide him through what is without a doubt going to really effect his mental state. So if anyone knows anything please can you point me in the right direction.

Wendy, I am so sorry to hear of Steve's problems with the surgery! This was the first I heard about what happened. I had been worried about Steve, knowing how serious his situation was. Im so sorry the surgery failed!!!! It is very rare what he is going thru. Only a handful of members have encountered this situation.

What you are describing is very similar to what happened to me. This is why I look the way I do, I am missing half of my lower jaw. You had just joined when I went thru this back in August 2009. I dont know exactly how many posts are still floating around of what I went thru but it was a very long difficult road. I was kept in a medically induced coma for 3 weeks in ICU then moved to the burn unit (for better observation) for another couple weeks. Since Steve had radiation, his healing may not be as fast as someone else. HBO could be part of the healing process. Eating isnt easy but it can be done. I am able to eat very few things with no teeth and only half a lower jaw. My speech is better than many OC patients, even without teeth. I am easily understood, even over the phone.

As far as his mental state goes, it will be a long road for him. This whole thing will be hard! Dont rush to give him info, let him ask you. There isnt much you can do but be there for him as much as you can. If the hospital has a therapist available I suggest trying to get them involved in time. Acceptance of his new normal will not come easily. Think of how many members consider themselves disfigured due to having a neck dissection scar or the 'shark bite' wrist flap. This is very different and cant be hidden as easily. Time will help him heal both physically and mentally. Sorry but this is one thing that Steve will need to tackle mostly by himself.

Im here for any questions you may have.

Hi Wendy. I'm glad Christine responded as unfortunately she has walked the walk. I don't have any medical info. to offer just wanted to let you know that I am thinking of you both and praying hard for both of you. I can't begin to imagine how frightening this all is for you. Just know that we are all here to support you and Steve. Hugs, Wanda

Thank you. It is completely overwhelming what is happening to him. So much not what we were prepared for. Christine you give me hope that we can get him through this ok and that we can move on to better days. He is strong and stubborn so I'm hoping those traits kick in now.

He's never cared too much for his appearance but I know the last surgery he did comment on his looks so I think this one is going to be a struggle. He has never been a big eater and food has just been something he has had to do but I know that the difficulties he has faced over the last year with food have gotten to him so this is going to impact him now more than ever.

Some pleasures in life will be different after this but I will help him to find other pleasures to replace then. He is going into HBO as soon as they can get him there. His HBO doctors heard he was in the ICU and came up to see us before his 2nd surgery. They are determined to get him back in there with them. I am as well as I know how good it works for healing. He now has multiple spots to heal.

Thanks again. Not sure where I would turn without all my friends I've met through OCF. There isn't a person in the world other than all of you that understand where we are and now even less understand what's happening now.

Wendy, I'm sorry to hear that Steves surgery has not gone as planned. I know this is very harrowing for you both and especially for you as his wife and caregiver when you just want to make it as easy as possible for him .
Thank goodness for Christine and her advice and experience. I dont have any specific advice as I haven't been down this track.
All I can say is that when Kris had his salvage surgery last year I too was concerned as to how he would cope with the after effects, especially on his psyche. The SLT suggested an antidepressant and Kris and I both agreed to go down that path - before he got depressed. He started on Citalopram on about day 5 post op. They take about 3 weeks to kick in so I wanted to start them as soon as possible.
Well he did cope well, he may even have not needed the pills, but I did not want him to be dealing with a major depression on top of everything else.
I weaned him off the pills about 3 months post op and he hasn't looked back. Just a suggestion.
Hope Steves condition improves quickly now,
Tammy

Hopefully once he heals they will be able to start some kind of reconstructive surgery - Christine is likely the expert in this matter so I will defer to her but wishing you much luck and prayers.

Sorry to hear about your husband's complications. I had a pec flap in August to my neck, but was after a neck dissection, intraoperative radiation, which healed quite well, but was under different circumstances than Steve's I'm not familiar with. As mentioned, once he stabilizes, heals, they can do reconstruction. I wish the best outcome.

Thanks for all your support everyone. He is doing ok and they are starting to talk of sending him home to continue his recovery. His speech is good but as for food we aren't sure yet what challenges we will face. At this stage he has a nasal tube for feeding and is putting on weight with this. He is in good spirits and is an absolute inspiration to me. He is ok with what has happened and I'm hoping he will continue this way. He is an incredibly brave man and I feel very lucky to have him in my life. Fingers crossed I get Steve home soon.

So glad you'll have him home to recover. Hugs.

As you say Steve is so brave but you are too Wendy!
Great to see that he is doing well and even putting back some weight. I read elsewhere that they will let not let him leave the hospital until they think he is ready
I know you are both looking forward to that day and hope his recovery keeps progressing as well as it has so far over the last days
Love to you both,
Gabriele