Hi everyone,
I haven't posted in awhile. 2 weeks ago my world turned upside down. My mother 71yrs old SCC on right lateral tongue, surgery 1/2 tongue removed with clean margings, finished IMRT 34 treatments on July 3rd 2006. She did well during treatment.
Shortly after she started having all the side effects of the radiation. Sores on tongue, and severe pain. Was put on neurontin and ms contin. She seemed drugged up all the time, sleeping etc.

My dad was taking her to see the ENT and he did not like the looks of the thrush, said it was bad.Put her on diflucan and nystatin swish and swallow. Went back the next week and said it was looking better. That was on tuesday. I ordered her the carnation drink that someone suggested.
She was having a hard time eating, no appetite and looked like she was losing weight. This was very stressful for my dad. Well that friday he called me and said he felt dizzy that day and wanted me to check his blood pressure. He also has spinal stenosis and always has shoulder and neck pain. Anyhow I went to see him and his vitals were normal and he just said his neck and shoulder was hurting, I related it to the stress.
I called my brother to take him to the ER. He came right over and took him. The ER dr. thought it was related to the spinal stenosis and was going to send him home but did an EKG and Blood work first. She came in the room with my 2 brothers there and told my dad that the ekg showed that he had a heart attack, then he went into v-tach, my brother fainted and they shocked my dad 4 times to bring him back to sinus rhythm, rushed him to emergency heart cath and put in 3 stents. LUCKY TO BE ALIVE. Did fine the next 2 days. He still has some blockage on left side of heart 50% of smaller vessel. The next day I went to see him he was having trouble breathing and runs of v-tach again. They finally got him stabilized. His kidney function went up due to the dye from 2 heart caths, found out he has mild emphysema. He is 73.
He might be released tomorrow. Then in about 6-8 weeks they might put a stent in on the left side.
They have to wait for his kidney function to return to normal before they can do anything. He has been in the hospital 2 weeks already.
Back to my mother, after that friday with my dad I noticed her coughing when she would drink fluids and her hands were shaking. I took her to the radation dr. on monday and she weighed 139lb, lost total of 40lb. he set her up for swallowing test on wed.
That tues I took her to the ent dr. and he did not like the looks of her tongue, he said it looked bad, area where her graft was looked brownish and he was worried that if this does not heal he might have to take more of her tongue. He thought she was not healing due to lack of nutrition. He said her tongue was just hard as a rock and still swollen from the radiation.
I about fainted in his office. Trying to be strong for my mother.
Anyhow she failed the swallowing test, was aspirating, right after the test I took her back to the radiation dr. and told him I want her admitted. Her prealbumin was 18. 18-45 normal ranged. He admitted her and we got a PEG in the next day. The GI dr. said her throat and esophagus looked good, no sign of thrush. We finally got her home 3 days later.
Chest xray was normal. They gave her IV fluids in the hospital.
She is not on any pain medicine, just tylenol. She occasionally get a headache but I think it is from lack of sleep and stress. He gave her xannax to help her sleep. This was making her like a zombie. I took her back to the ent. Dr. and radiation dr. this week and they are seeing improvement. They seem to think with the nutrition and keeping her mouth clean will help the healing. Her mucus is still real bad. I have a suction machine for her which is helping.
She rinses with peridex 2 times a day.
He put her on elavil to help dry up the secretions and he said will help her sleep better.
So things are showing some improvement.
I have just been in a state of shock with both of my parents at the same time. Feeling like I am trying to do everything I can just to keep them alive. It's been very stressful. But things are getting better.
My mom has gained 5lbs already and she looks more heathier. I can even understand her better when she speaks, I think the swelling is getting better. I think her tongue would not heal because of lack of nutrition and then the thrush was so bad and then that happened to my dad. The radiation dr. said it's an ulcer that she has from the radiation on top of getting thrush.
She does good with her peg tube. We have a visiting nurse come out 2 times a week.
She can't having anything by mouth right now.
The ent dr. said lets give it a month and keep her mouth clean and then maybe we can get her to the speech therapist to help work on her swallowing.
So I am praying that this nutrition will help her heal. She still seems sleepy all the time. I go over to see her and she sleeps all the time.
Sorry this is so long. Thanks for listening.
My advice is get a peg tube. It is a life saver.
Nobody ever mentioned a peg to my mom because she did so well during her treatment. 3 months post radiation she had all these problems.
Keep us in your prayers.
michelle

Michelle, Indeed, you do deserve to be in everyone's prayers! What a horrific 2 weeks. Be careful with your own health- you've got alot on your plate. Amy

Wow! I just had to let you know that you, and your parents, are in my thoughts and prayers. Please take care of yourself, and keep us posted on what is going on with you. Linda

Michelle,

I too say WOW ! My Thoughts & Prayers are with you and your Family!

I hope you are getting some help. You can not do this all by yourself. You need a break.

Take care.
Diane

Michelle, you are a wonderful daughter to be there for your parents when they needed you. I was the one that mentioned the carnation VHC. It really helped me and I drink 5 cans a day which equals 2800 cals and I have put on 13 of the 32 lbs I lost. Is she still using it?