Danielle, I was worried about his reaction post op. Poor guy! Mentally he is beating himself up over things that cant be changed. This road is so much harder on patients who internalize things. Im hoping the medications will eventually work to lift his depression to a more manageable level.

Im sure you and his mother are both past exhausted. Please remember to take care of yourself too. Is there anyone else who could take a couple shifts to give you guys a little break? Even if its only a 4 hour visit every other day, it would help. You could take turns having a short day there or it could cut 2 hours off each of the time you spend at the hospital.

Best wishes!

[quote=Mysonny]Today they wanted to remove his trache for a smaller step down one and do a procedure to move his feeding tub from his nose to his stomach - they beleive he will have this for 2 months or so. He refused both procedures the minute he found out they involve needles or another surgery. Dr's tried to talk him into it, but from what I understand nothing they said helped.[/quote]
Removing the first insert of the trache and replacing it with a smaller one is part of the process of getting the whole thing removed. It is a progression and he'll need to allow this to happen in order to heal. Steve is probably at the worst part of the trache experience right now if he has a similar setup to what I had. Luckily I didn't have the anxiety issues that he seems to be having (other than the fear when the trache felt like it was starting to clog up), nor did I really have trouble with my NG tube (& therefore didn't need the PEG) so I can't really comment on those issues.

My first trache insert had the full cuff and they supplemented some oxygen as well. Once they moved me to a smaller one, the oxygen was removed and I had to learn to breathe on my own, unassisted. While it was really, really nice to get one of the tubes removed (actually two because they had removed the catheter by then as well), it was obviously harder to breathe at first. Combined with the tendency of the trache to clog up, it was quite disconcerting. But it took another day and then I started to improve quickly. A few days more and they can put the plug in the end of the trache & if he does well, they can remove that nasty thing.

Good luck with the next steps of the process and take care of yourself too!

[quote=Alpaca]If the hospital could put you in contact with another youngish man who has gone through the same thing, that might help. For all the love you and his mum are giving him, you can't show him what it looks like a year or so down the track.[/quote]Danielle,

That's some great advice there from Alpaca. That's exactly what happened to me after my laryngectomy. I couldn't speak anymore. The only way I could communicate was by writing or trying to use sign language. I was mad, upset, scared, depressed. I thought I would never be able to talk again.

Then one day a man who had the same disease and operation visited me while I was laying in my hospital bed feeling sorry for myself. His voice was completely clear and understandable, he could speak and pronounce his words very well. All of a sudden I had hope. My entire mood changed. I looked at that guy and said, "I can be like that. I can speak again."

And of course I did. I have even done public speaking on quite a few occasions.

Please ask the doctors, nurses and speech therapists at the hospital if they know anyone with a history similar to your boyfriend that could come to visit him. I'll bet it would make all the difference in the world in his mood and attitude.

Best wishes and good luck. Hoping for the best for both of you.

Hi everyone - Thought I would drop by and give an update *******

Steve came home last Friday. They did remove the large trache and he had the smaller one inserted 36 hrs before we left. I was there when his Dr did it. They asked him to try and speak by plugging the hole - he did but just a loud noise came out. Then they capped it that night and 24 hrs right before we left they removed the trache all together. I was so happy he did not come home with. He still did not let dr's place the feeding tube in his stomach so he still has it through his nose. Even after at home and pulling on it a few times and hurting himself by accident he still will not consider getting it through the stomach.

Home has been interesting. The first day back he was alert and just trying to get comfortable. While I was trying to figure out all the meds they sent him home with - stool softener, laxatives, anti depressants, morphine and a sleep aid. He hardly slept the first two nights and either did I. I think the morphine makes him restless. He could not lay in bed for 5 minutes without getting up to groom himself, clean his trache site or just walk around. I asked him and he said he just felt restless. He takes the morphine 3-4 cc every 4 hrs to stay ahead of the pain. I have noticed other symptoms when he takes the morphine - jerks and twitches and drugged out look. Last night it was worse. He had forgotten when he gave himself the last dose - I write them all down and keep to the schedule unless he says he does not need it yet. Well I had to go shopping and he must of took another dose while I was gone. He could not remember when. He finally fell asleep -sitting up on the sofa - he cannot sleep laying down he just coughs like crazy. Still he coughs a lot and has some discharge from the trache. Well all this morning he was still very disoriented and it took him long periods of time to put a thought together then write it down. He slowly came out of it. He is on boost plus and is supposed to take 7 a day. I was lucky to get in 6 yesterday. Before the morphine insolent I could see he was feeling better. I can understand him more and he was speaking more. It is hard but clearer then even the day he got home. I repeat what he says so he knows I heard and understood him. Today it was a bit worse but I think the morphine was part of it. Hopeing this is a good sign that I can though hard at times understand him this soon. It is better if I remind him to hold his hand over his trache site and take s deep breath before talking. Any other suggestions?

Yesterday he was brushing his teeth and notices s stitch around the base of one of his tooth and it appears to be attached to his tongue. Is this normal. His reaction was - look Dr Otto must have done this to keep my tongue down so I do not bite or hurt it while the flap heals! Maybe that means once it does I will talk again ? I said maybe we will ask her but you are already talking and it seems to be getting better already and with therapy and work I know it will keep getting better.

His spirits seem a lot better too. But that also could be the drugs. lol.
There are sparks of him and his usual personality so I will take that for now. Anyways sorry to be so long winded but it had been awhile. We go back to Moffitt on Friday for a checkup with his surgical team. Bye for now - Danielle

That sounds like a considerable improvement Danielle. I'm pleased for you both.

I can identify with the restlessness. I had it too but didn't associate it with morphine or other pain relief. It's still very early. Soon he might not need so much pain relief and then the glimmers of his old personality will increase.

Hope you have a good check-up on Friday!!

Thanks for the update! I was wondering how everything was going.

Glad to read he is making progress. Healing takes time, usually much longer than anyone expects or is happy with. Being so soon after such an invasive major surgery Im sure there is still considerable swelling (even if you cant visually see it). Once that goes down his speech should improve. A speech pathologist should be a huge help in making his speech clearer. They have many exercises and tricks which can be tried.

Keep up the good work! Being a caregiver is a tough job. Make sure you take some time for you too.

Best wishes!

That's excellent news that he's home so quickly and I'm so glad that you didn't have to come home with the trache still inserted. I guess that must mean that the flap donor site and skin graft source site are healing nicely as well. I still hate to think about how many gauze pads and rolls of nonstick tape I used while my wrist healed. People kept asking me to show them my tattoo, haha.

I can't really comment on the morphine issue because I didn't have that much pain & didn't need it at all after the first three days. After that, all I needed was an occasionaly tylenol. Hopefully the pain subsides and he can cut off the heavy drugs soon.

Did they start feeding him (conventionally) in the hospital at all? Before they let me go home, they made sure I was able to feed myself, and showed me how to place food over the hump of my tongue, eat smaller bites than what I was accustomed to, and swallow. After I proved I could eat enough calories this way, they removed the NG tube.

Not sure about the stitch anchoring his tongue down. It's probably just a function of where the incisions had to be made in his particular case, and support was needed in that particular spot. Once it has time to heal, I suspect he'll be able to get it removed. Something to ask about on Friday. Maybe they'll even pop it out then.

He's been through a pretty serious surgery, a helluva scare and now he's doing better than perhaps he imagined. The healing is happening and he's already proven that he can speak a little. This should lift his spirits and accelerate the improvement. As the spot where the trache was heals a bit more, he won't have to be so careful supporting it with his fingers. There may be a bit of weird vibration that is happening when he tries to speak, but it will start to feel more normal soon. Speech clarity will vary from day to day. It still does in my case, about one year post surgery. But he should be improving significantly in the next few weeks.

That's a pretty good amount of progress in a short period of time. You're a pretty good writer and I liked reading what you wrote, it's likely good for you to express yourself that way. It's great he has someone as caring as you looking out for him.

I haven't had such serious surgery but I do know that when I've been on a lot of pain killers I am up at strange times in the night doing weird stuff, like gargling, flossing messing with creams for my neck, burns and what not plus restless legs, jerking and falling asleep setting up. Do you all have a humidifier? I find it helps a lot. Can he go out at all yet? I'm thinking a little walk or drive might do him some good as soon as he can. A change of scenery beside the hospital and house helps.

Keep us informed.

[quote=QueenKong]Do you all have a humidifier? I find it helps a lot. [/quote]It helped me a lot too. Still does, especially in winter when the air is less humid. If you don't have a humidifier, or even if you do, it also helps to sit in the bathroom after one of you has just taken a shower and breathe in all that steam in the air. Hint: make sure you don't turn on the exhaust fan and let all the steam out.

What wonderful news! I am glad to hear that he is progressing well after his surgery. It sounds like he is coming along quite well. Thanks for the updates.