Anne, how wonderful!!!!! I loved your post!!!! It goes to show people facing this kind of surgery that it can be a simple procedure. Everyone is different and some have a hard time while others are much luckier. Congrats to your husband for doing so well. Happy Holidays to you and your family

What a wonderful Christmas present for you both and don't know knock the face lift part. That can bring a big boost to spirit also. Here's to A Merry Christmas and a quick recovery.

Take care,
Eileen

Great news about your husband's surgery. So happy that he is home and recovering. My husband also had a mandibulectomy for ORN and I know how painful that was. I wish you both well as he continues to heal. Merry Christmas!

Well, things aren't going as planned (do they ever?)

The surgery appeared to go well and recovery was going well for 9 days until infection set in. Now, Harry is back in the hospital with IV antibiotics and an NG feeding tube. The is a "hole" under his tongue which has not healed and allows anything he puts in his mouth to run out the incision in his neck.

They expect that they will probably have to remove the titanium plate and let things heal up for 4 months or so before putting the plate back in again. The decision will be made on Wed when Dr Marx returns.

Any thoughts on things I need to cover with them on Wed?

If this happens, I think he should have a peg tube for the interim, as he is down about as low as he could safely go with his weight.

Any input from those who have been through this (especially you, Christine!) would be greatly appreciated.

Thanks! Anne

Oh gosh Anne, I am sorry to read this. Harry must be so devastated by the success then a complete turn around. I am so sorry he is going thru this!!! At least he is not in pain from the osteoradionecrosis any longer, that pain is excruciating!

Please remember we are all different. I went thru something similar when I had my jaw surgery. But the difference was my free flap failed while I was still in the medically induced coma. I slept right thru the whole thing. The second surgery wasnt an easy one working on not just a radiated area but also a place that just had a major operation. Somehow I picked up MRSA and ended up staying in the hospital for 2 months. I did have a feeding tube put in when I had the first surgery.

When the docs did my second surgery, the metal jaw was removed. My ENT reviewed the options with me and advised against trying to redo the original surgery and put in another metal jaw. He said I could also use my leg bone or a cadaver bone. He warned me of the high risk of failure that I ran if I would retry it. He said he didnt think I was physically strong enough to get thru another attempt. I chose to stay like I was and recently had some reconstructive surgery which has helped. It was pretty minor compared to the others. Ive come to terms with how I look and enjoy my life how it is now. It took a while for me to regain my strength and to mentally handle my situation.

The best thing you can do for your husband is to be by his side. Harry may not even remember alot of this time. I couldnt remember my son coming to see me but he sat there every single day. He would remind me of what we talked about then I could remember his visit. My son helped me to walk the halls every day to help me get stronger. So just be there with him and talk to him so he doesnt feel so alone. If he is allowed to walk that will help him to keep up his strength. Check with his doctors to see if he is allowed to go on assisted walks around the floor he is on. This also breaks up the day for him so he isnt so bored.

Dont be surprised if the swelling takes a couple of months to subside. Most doctors will make you wait for a year before they do any reconstructive surgery. I begged my docs but they kept telling me no. The area must heal before they try any reconstruction. Also dont be shocked if he physically looks different. Not just from the swelling, the surgery could leave him disfigured. Make sure you speak to the doc about what you should expect. I know to you it isnt important but to Harry this can be very difficult.

I see your husband already did HBO, he could need more. Thats how I ended up doing so many, I had a tunnel that ran along my cheekbone to a hole under my ear. It just wouldnt close. It took about 10 or 11 months for that wound to close. All wounds must heal from the inside out. Harry's wound sounds like it is very deep. Surgery will close it. I had IV antibiotics with the picc line for 9 months. That is unusual but dont be surprised if Harry comes home from the hospital with the picc line.

I would ask for a peg tube too as long as Harry is ok with this. It could be a few weeks to a couple months before he has recovered enough to eat again. The NG tube is more of a shorter term item. Make sure you ask the doc his estimate of recovery time. That will determine if he really will need a peg tube. If he needs a trach, ask for a possey muir valve. It will allow him to talk while it is in.

Try your best to help Harry keep his spirits up. This could be a challenge. I havent been a caregiver so dont have any ideas about how to do this. Caregivers are such special people! Make sure you take care of yourself thru all of this. Its important to get your proper rest and nutrition too! I hope I havent scared you about this. Its so much better to be prepared going into this than getting a shock later. If I missed anything or you have further questions please just ask.

Thank you, Christine for all the good informstion. You are very generous with your time in helping others!

Physically, Harry is doing better. He is getting good nutrition with the ng tube, so he is stronger. He went walking around the floor today at a pretty good clip. The swelling is way down. His neck incision is looking very good. Too bad that they will likely be cutting again. They said that they might want to get the plate out from inside his mouth, because they want to avoid further risk to his one open carotid artery (the other side closed without incident a few years ago.) But, we will have to talk about that in more detail.

Mentally, he is becoming more accepting of the idea that he will likely need more surgery and that it won't be pleasant. But, he said that he wants to be sure that it is used only as the last resort. We will have lots of questions for the main guy on Wed.

I know that my role as a caretaker is especially important in the hospital. Yesterday, I had to fight to get the feeding tube approved so they could start the feedings. They tried to tell me that the feedings would have to wait for another day because the radiologist had gone home and the network link to the affiliate hospital was down, so they couldn't verify the proper placement of the tube. I refused to accept that the feedings would wait for another day. I told them that, if necessary, I would personally drive the film to the affiliate hospital. Shortly thereafter, they figured out a way to share the picture. They had to make an adjustment to the tube and, finally, they were able to start the feeding.

Then, the hospitalist doctor was allowing his blood pressure to go way too high. He had three successive high readings (each over 185). Each was reported to the doctor and each time he said that it was okay. When the next reading was 208, I told the night nurse that I wanted to talk to that doctor if he refused to prescribe something again. She handled the problem herself by telling him that she was responsible for this patient and she needed him to prescribe some medication NOW. Good for her! Since then, it has been back under good control.

Today, I had to press for hours to get his room changed so he could get away from the roomate who was constantly on the phone, talking incessantly for 18 hours a day.

Harry likes it when I advocate for him. I think it makes him feel that he is cared for. He tells me that he appreciates these efforts because he couldn't possibly handle them himself.

By the way, I will be discussing these incidents with the hospital. What would happen to a person who doesn't have a caretaker watching out for them?!

Thanks again for your caring and your help.

Anne

Good for you, Anne! Kudos for being your hubby's voice. Being a caregiver sure tests our abilities. I sometimes think I could run a company with the negotiation and advocacy skills I learned while caring for my husband. It is amazing what we can accomplish. And our involvement does help banish some of the fear our loved ones experience because they know someone is in their corner looking out for them. I love being my husband's caregiver. He doesn't need me in the way he did but we still approach this as a team. Harry is a lucky man to have you caring for him.

All my best-
Anita

Anne, Im glad to read that things are slightly improved for both you and Harry. Good for you for standing up for your husband! Every patient needs an advocate who will push the staff to do their jobs. The blood pressure issue is something that shouldnt be played around with. Good thing you were there and had a good nurse.

Ive had way too many problems while I was hospitalized. Never had a problem while my son was there. I had alot of young nurses who would come take care of me when he was there. Only a few times he had to round them up for me.

With proper nutrition and hydration it will help Harry to feel better. He must be doing better if he is walking the halls with you. That will help him more than you realize. It will work him muscles instead of letting them atrophy just lying in bed. It will make him feel less helpless. So glad that Harry is up and able to take a stroll with you.

The hospital I go to has only single rooms in their newer wing. Several times Ive stayed in the new part so I forget about the roommate situation. Glad you were able to get him moved. Some people can be so inconsiderate.

Anita is right, Harry is lucky to have you as his caregiver. You are doing a great job!

Thought I would update this ongoing saga...

Harry came home from the hospital after a week long stay. The decision was to forgo surgery for the time being and see if the infection and wound can heal with IV antibiotics for four weeks, followed by oral antibiotics for an undetermined time.

As you predicted, Christine, he now has a picc line. He is on an IV pump and a nurse comes once a day to refill it. They taught me how to disconnect the IV line between infusions, so he isn't tethered to the pump all the time. I have to be sure the connections are kept as sterile as possible and the IV line is flushed every time he disconnects.

He is not allowed to put anything in his mouth except water and pills until the hole in his mouth closes. So, he also had a peg tube put in last week. This is his second time on a peg. We are happy to have it so he can maintain good nutrition. His gastroenterologist told us tonight to add MCT (medium chain triglycerides) to his Ensure to help him to regain the lost weight.

The home health nurse got a very low blood pressure reading this morning, which was unusual for him. He had just been standing for awhile. She did some further readings while he sat, and then while he stood, and she found that he has orthostatic hypotension, which is greatly lowered blood pressure while standing. The gastroenterologist advised us to add a very small amount of salt to his Ensure to help with that. Of course, we will have to alert his cardiologist.

We went to the HBO doctor today to see about having more HBO treatment, as the Oral Surgeon thought that further HBO treatments might help with the hole closing. We have to wait to see if this will be approved by Medicare, because he has already had a number of HBO treatments.

In the meantime, his jaw is red and very sore. Before the surgery, he had infection, pain and a broken jaw. Now, he had infection, pain and a hole in his mouth. So far, he traded a broken jaw for a hole. It is discouraging because we were expecting a better trade than this. But, hopefully, the hole will close up and the infection will go away with some more time. If not, the only other option is more surgery, which both the doctors and patient want to avoid.

I re-read your posts, Anita and Christine, about your experiences and they give me some hope that this will eventually work out in the end.

On and on it goes!

Anne

Thought that I would post an update...Things ARE getting better.

Harry had a bout of aspiration pneumonia last week, but that was quickly controlled. Picc line was taken out last week and two antibiotics are now taken orally. (Well, not exactly orally, but via peg tube.) Hyperbaric treatments are proceeding and the multiplace chamber is much more comfortable and less intimidating than the monoplace chamber used last year.

The best news is that the hole in Harry's mouth is 2/3 closed and the oral surgeon expects that it will fully close soon. Oral antibiotics will be discontinued in another two weeks and then we will cross our fingers and hope that no infection flares up. Still no eating until the end of March at the earliest. Pain is getting better.

Things are looking up! He may avoid more surgery after all!