Hi Bette, good to hear Reggies recovery is going well.
Kris started taking fluids orally after 3 weeks. He started off with just 10 mls at a time, delivered with a syringe with a long cannula attached. The idea of this was to deliver the fluid right to the back of his mouth. Initially he wasn't to keen and only did about 3 syringe fulls.
Once we got back home he just started drinking. He puts about 50 mls in a glass so that the glass isn't too full and won't spill on him. He then sort of pours the fluid into his mouth then tips his head back. He then swallows. The speech therapist has no idea how this is done. Within a week he had mastered this. He has continued to drink since then and he has not used his PEG for nutrition at all. Kris will only do Liquids though. He won't try yoghurt, custard, pur�e at all. He says he can not get this to the back of his mouth to swallow. So he lives on smoothies and Fortisips.. He does taste and varies his smoothies to get different tastes. The taste is not as strong as before but he definitely does taste.
After his meals he does a wash out with water to get the residual bit of liquid out.
I have to say Kris is vey self conscious about this process. It has only been recently that I have been able to get him to have a coffee with me when we are out. Of course no one notices anything, but we do pour small volumes into an extra cup for him to swallow.
Recently I have managed to persuade him to swallow all his pills. He was very reluctant initially. Now he swallows them all and we haven't used the PEG for 2 months now. He simply puts the pills as far back in his mouth as he can, drinks and then swallows..
It's all about encouragement, perseverance and little steps.
Hope this helps,
Tammy

Bette, look for posts from misskate. She went thru so much and is doing very well with her limitations. Here is a link to her profile where you can view a list of her posts. Hope this helps

misskate profile

Hi Bette, I had about 60% of my oral tongue removed (including a small part of my base and half of the tip). It was probably about 9 days about before I was able to be somewhat understood, but still continued to use the dry erase board for the first 2 weeks. I understand Reggie's frustration, both of my parents need reading glasses yet never seem to have them on hand, so every time I wrote something they were always struggling to read it and would have to scramble to try and a pair of glasses... it was somewhat commical, but very frustrating when you are trying to communicate something quickly!

I was discharged from the hospital after 8 days, but had to stay locally for another week for daily check-ups. Those first few days in the hospital were by far the worst for me out of everything I went through during this ordeal. I would definitely recommend him getting on some anti-depressants, I never had taken any before and kind of felt like I didn't need them because the depression and fear i was feeling were completely rational; however, they helped a lot non-the-less!

Eating took a while to get good at, so you have to be patient. I remember the first several months after surgery I was constantly using my finger to move the food over to the "good" side of my mouth. Every now and then food will still get stuck, however, I feel like I can eat out in public and no one will notice I have any issues eating. I have to eat much much slower, but thats ok.

I know speech functioning and taste is different for everyone. My taste is back nearly 100%, as far as I can tell, and i'd say my speech is around 85%.

Anyway, you and your husband will be in my prayers!

Tuesday - Reg got his drains out today. And is no longer on the IV. Only for pain meds. He got up and walked twice, needs to walk more but the pain in thigh is big!!! The team is going to address that tomorrow with maybe a patch for pain in the leg. Other than that, he's doing great. Tomorrow will be a week since surgery so they will introduce sips of water and ice chips. Let's hope there are no leaks.

Good news Bette, seems like he is totally on track. Yep the thigh was super painful and burned...go figure with all the rest of the stuff!

Thanks for keeping us posted, and I hope you are doing as well as he is.

Wednesday- Not too much happened today. Reg is walking more and sat up in the chair most of the day. The pain in the leg after walking is pretty intense so the exercise is brief. He is tolerating the tube feeds well, however, He has alot of residual after 4 hours when it is time for another feeding. At 5 hours he is empty so I have requested they up the calories per feed and reduce by 1 per day. The team and the surgeons were in surgery all day so saw them this a.m. Doppler sounds are strong and began introducing sips of water and ice chips. Ice chips went well but the water through the straw failed. Reg can't suck... He tried drinking from the cup but the tongue is still very swollen and he can't tilt his head back very far so we will try again tomorrow. I think that Friday he may be discharged since there was little success with the liquids today. Hopefully we will know the pathology results tomorrow. That will help with the healing as well. It's turned cold in the city with some rain, but I'm enjoying the change. Thanks eeveryone for the support.

Sounds like good, steady progress, Bette - You really are on top of things. All this great caregiving I'm sure is a large part of Reggie's progress! Remember to take care of you, too.

Hi Bette, how are things going?
Is Reggie nearly ready for discharge?
How is he progressing with his oral intake? Kris can't suck either it's not a biggie.
Did you get the pathology results?
Thinking of you both,
Tammy

Sunday -
Well what a whirlwind of a couple of days. On Friday morning the docs said Reg could go home. Yeah! After all sorts of things (medical equip.) being delivered to the hospital to take home with us, he was finally discharged at 4:30 pm. I don't drive well at night so we thought it best to stay at the hotel one more night. That went Okay. Reg slept most of the nght and then we drove home on Saturday. Of course it's alot of work caring for him, but that's okay, I don't mind.The leg area where they took the tissue is really bothering him and now his right leg is giving him fits as well so walking is pretty difficult. He live in a 2 story home and the stairs are a challenge for Reg. We have to return to the city on Wednesday for a swallow study and then once a week for a month. Other than that...the swelling is still pretty bad and of course the bruising. The tongue is also still quite swollen. Reg is trying to get water in his mouth with little success. The ice chips are okay but he has become sensitive to the cold. I'm really scared that he may never swallow again. He says it all feels pretty numb and that he can't tell if he's swallowing or not. I keep telling just to swallow for practice but he can't tell. So I'd say he's not. Anyone have any ideas?

I want everyone to know that Regie passed away on Thursday morning in his sleep. His courageous battle has ended and he with God. I will love him forever.