Hi all. Well, he's 17 days out and some things are better, but the mucous is driving him out of his mind. Also, his throat is pretty sore. I think his throat is really irritated from the heavy coughing and hacking he's been doing. Also, he is off all pain meds except for oxycodone right before bed. Maybe his sore throat is becoming more apparent because he is now off pain meds? He is not sleeping well and rarely naps except for 10 minutes here or there, sitting in his chair.

The skin on his neck looks wonderful and smooth, again. We had an appt. with the chemo onc. a few days ago and his labs are starting to come back up. His potassium was really low again so they put him on potassium pills. I dissolve them and push them through his PEG.

Which brings me to another issue. He is not taking anything by mouth except for a few sips of water here and there. He says the mucous it too thick and he just can't. We are putting all nutrition and hydration through his PEG. He's gained a few pounds back and takes LOTS of water through his PEG. Is it normal for him not to be taking anything by mouth yet? I'm getting worried.

I have been reading through the forum trying to determine if he's "normal" or not. I know everyone is different but I'm sure some of you can chime in and let me know how it was for you at this point. He's extremely depressed the past 2 days. I just don't know what to do for him.

Thank you for listening, as always. I appreciate any and all comments you may have.

Bless all of you.

Carol

Carol,

17 days out is about the worst of it. Sometime soon you will see slight signs of improvement. I started eating food right around the 21 day mark.

Now here is the hard part. You can not wait until no pain to start eating. He is going to have to start eating and soon. For me the mucous started to go away the same time I started eating. I dont konw if it was the act of eating that made it better, but the mucous went away. It's a guess, but I bet eating will improve his condition. Also get back on the ensure or boost orally. At that point I still had no taste but yuck. So it really did not matter what i was eating or drinking.

I also went to a speech doctor and did the barium swallow just to make sure that nothing was going down the wrong pipe. I went 2 times a week for 4 weeks. Sometimes having a doctor/Nurse can apply some positive motivation to get him to eat that you can not apply.

30 days out and I wanted the peg removed. It was that quick. The hardest part it the first bite. It sucks and hurts. However, each meal will hurt less.

At this point he is sick, tired, and everything hurts. The only thing that will make it better is eating and moving. My advice is call the RO and get an appointment to see a speech therapist.

Hi Carol,

What you describe sounds quite typical at just two weeks post. In fact, he is doing pretty well if his weight is stabilized and the only real issue is the mucous.

Pain is very common so take what is needed to be comfortable. Healing is faster when there is less stress and pain.

Mucous is pretty common. There is a suction device that removes it mechanically.

Very important is to keep swallowing, even if it is water and liquids. Start soft foods, mashed up and blendered and try hard to get the swallowing to keep exercising.

Keep up water via PEG to stay hydrated until he can get enough via his mouth.

Doing great, hang in there.