Saturday afternnon. Reg was moved from ICU this morning. That was quite an ordeal. He's down to 1 IV and the NG tube. I am worried about his state of mind right now. He is having difficulty with communication. We are using a white board, but Reg likes to gester more than anything and he tries to mouth words, which before this surgery I had gotten pretty good at understanding him. Now with the tongue so swollen what he's trying to say to me is a mystery. I give him the white board and just pushes it away in frustration. If anyone can speak to this as a caregiver.....

Tammy I will watch his retention, however he is on Lasix so I'm not sure that will be an issue.

I also would like to know if anyone could speak to the next few days as to what to expect. I feel like I'm flying blind.

Bette - After surgery, my son used a laptop and wrote in BIG letters and turned the laptop around so people could see what he was saying from across the room. Or they would stand next to him, facing the laptop screen. It could work with an iPad, too or something similar to iPad. Paul did get so frustrated with me especially after he came home from the hospital, because I couldn't understand him sometimes. . .I tried reading his lips and finally I told him I was a little deaf and he needed to be patient with me (I really wasn't that deaf) and he was better after that. To communicate, I would try to ask him just yes or no questions so he could reply with thumbs up or down gestures or shrug his shoulders. Or I would give him choices of #1, 2, 3 and he could hold up that many fingers. When his 5-year-old daughter was with us, she got so used to it, she started using our special "sign language", too! Maybe someone could lend you a laptop or an iPad for Reggie? It might be easier to type than to write out stuff. I know it can be so very frustrating. I remember as a child I got laryngitis for about a week and I still remember how depressed and frustrated I was not being able to talk which is nothing compared to what a cancer survivor has to go through! Sure hope things get a little better in the communication area. I don't know about the other issues you mentioned, but I'm sure someone else will be along that can suggest something. From what I've seen of all your caregiving efforts, your "flying blind" is pretty awesome!

My best friend and I worked out some basic flashcards - pain, itch, tired, bathroom, wash, kleenex, cold, hot.

I found not being able to speak the most frustrating part of the surgery. writing was difficult with one hand in a huge cast from the flap site, and I figured that certain motions (like miming plucking a kleenex) were obvious and it irritated me when people didn't get, especially since kleenex was constant as I was drooling like a drunk.

For me the post surgery went like this:

day 1 - surgery
day 2 - ICU
day 3 transfer to ward - this was hugely painful for me (transport by wheelchair);

day 4 - off morphine pump, to injections of morphine, a lot of injections and medication which made me disoriented and sometimes confused. 1st drain came out

day 5 - 2nd drain out. Catheter out. Some med's reduced, less confused. Physio comes by to get me up and walking and assess the range of motion in shoulders. I was devasted at how little I had.

day 6 - ng tube out (due to allergy), 3rd drain out. I am doing laps around the ward, but very swollen and retaining alot of fluid

day 7 - just walking as much as I could, praying the swelling would reduce. end of day, regular trach out for fenestrated trach, and I immediately start plugging and trying to talk.

Day 8 - last drain out, trach plugged in the am to see if I can go 24 hours without using it. They give me lasic to get rid of the swelling twice, so I basically spent most of the day and night in the bathroom.

Day 9, trach out, doppler out, all iv's out.

Day 10 am discharged.

I was supposed to be in for 2 weeks, but got sprung early.

Hope that elps Bette. I'm send good thoughts to you and Reg.

Bette, unfortunately we caregivers do just have fly blind. Take each day as it comes. He should be mobilised out of bed each day and start short walks. Getting into a shower is good for the soul and sitting out in a chair for a couple of hours is very good for the lungs and general recovery. The physiotherapist should also be stopping by to see Reggie.
This is just part of the general recovery process.
Kris communicated with a white board initially and then progressed to using the iPad with the speak It app.
I think that you just have to be patient with him. Encourage him constantly and of course love him to bits.
Tammy

Sunday - They removed the drain from his leg where they took the flap this morning. The team meentioned that he could go home in a couple of days,I don't think they realize we live 4 1/2 hours from the hospital. But it would be nice. I miss my bed. Now that he has a private room I was able to spend the night in the hospital with him. Reggie seems a little depressed and we discussed that last night. Maybe some meds would be a good idea. We will see. But today is football so the day should go by pretty fast. We both enmjoy watching.. Thanks e eryone for your in sight. It is sop helpful.

Reggie must be continuing to do very well if the team feels he is ready to go home in a couple of days - but a 4 1/2 hour drive - Wow! They must not realize it's that far. It's good that you are able to be with him at night now that he's in a private room. Just your being there might ease his depression a little but it's definitely worth mentioning to the doctor in case there is something that can be prescribed. You are doing such a great caregiving job, Bette - hope the football watching was most enjoyable for both of you!

Wow. That seems awful quick. Kris was in hospital for 4 weeks.
Well, Reggie must be healing well with no complications. That is great news.
Do you have a hospital of any sort close by to where you live? This would at least give you some peace of mind if you did run into trouble. We live 2 and a half hours from our treating hospital but I always knew that our local regional hospital was there if we needed it.
I would discuss your concerns with his team Bette.
Yay, home in plenty of time for Christmas.
Tammy

Monday - All is going well. The swelling is beginning to diminish around the incision site. The native tongue is still 4 times the size it should be. Reg is now doing bolus feedings with the NG tube. I spoke with the dietician this moorning and she is on board with getting 2500 calories a day in him and 48 oz of hydration. However, is output isn't that great so they have stopped the IV for now. I think they need to up the lasix to 40 mg. a day. Will speak to the team tonight at rounds. We walked twice today and sat in the chair for awhile. The walking is pretty painful at the site where the flap was harvested. But at least he's up and moving. A pretty uneventful day. I'll take a few of those.

Thanks for updating Bette! Glad to hear your husband is coming along. Walking the halls is a very good way for him to break up the monotony as well as get his circulation going. I used to roam the halls with my son telling the nurses I was looking for the exit so I could escape. I really wanted out so bad but was much too sick to even walk to the car to leave. Keep an eye on his pain levels and speak up if he is hurting. Being in pain doesnt help the patient at all.

Best wishes with your husbands continued recovery!

So I have lots of questions for those that have been down the highway of recovery after almost total glossectomy. I'm really worried that Reg will not be able to gain back the ability to eat or drink or speak. These things were already somewhat difficult prior to this surgery.I just would like to know what the recovery steps are coming back from this abyss. How much speech therapy will be needed or has anyone really returned to eating like they used to. What is your taste like now, or isn't there any? Right now I just know what's coming and I hate that. So any and all please post with your experiences and your ups and downs. Thanks....