Hi everyone. As some of you are aware we are still dealing with issues with Osteonecrosis in Steve's jaw. Last week he had surgery to fix a broken left mandible and they have put a plate in to make his jaw stronger. They did try to do the surgery from within his mouth but unfortunately the surgery was more complicated than first thought so they ended up cutting across his neck so they can access his jaw. Due to how delicate the inside of his mouth is they were unable to get stitches to hold where they made the original incision so they have put him onto a nasal feeding tube until next thursday at this stage, to keep the inside of his mouth dry to help it heal and also to get some kind of calories into him.

We've dealt with the PEG in the past but the nasal tube is an entire different thing for us. Its much thinner than the PEG he had so I'm just wondering if anyone has any ideas on what kind of things we can put down it. He's currently on a drink called novasource and also sustagen hospital grade.

From everything I've learnt in the last 3 and a half years you guys here know so much more about what can and can't happen with these tubes than any doctor we've come across so thought I'd see what you all thought. Is there any other thing that you've had success with when it comes to being high calorie, nutritious and also fits through that very thin nasal tube? Anything thicker than a normal milk consistency seems to be a struggle to get it through the tube.

On the plus side though he passed the 3 year cancer free anniversary last Tuesday 28th of August Thanks in advance, I really appreciate your help and support. Christine, Gabe, Klo and Karen, thanks so much for the support you always give me as well.

I had the nasal tube for only 2 weeks but it was truely helpful. At that time I mainly poured Carnation Instant Breakfast VHC (Very High Calories) down the tube. The VHC had 560 calories in a 8oz can so I got a lot of calories for little effort. Carnation has now been replaced by Boost VHC. Of course I also used it for water and some meds. I found it painless and simple to use and maintain. I took showers with it. I never had nausea using it. Make sure it is secured to his nose. The first night I had it (in the hospital) I rolled over on it and it pulled out without me waking up and I woke to a very wet bed as they had me hooked up to a pump which kept on pumping! Once I got home (I never used that damn pump again) my wife and I secured it better to my nose and we pinned it to my shirt to lessen the tension from the nose to the dangling tip which helped a lot. After I didn't need it anymore the doc let me pull it out at home. Good luck.

Thanks for your advice David, we really appreciate it. It seems to be working well for everything so far but today it has really started to irritate Steve's nose. His nose is continually running and he said its hurting his nose, plus throat when he swallows. I'm not sure what to do at the moment with it. All I can think is tomorrow when he has hbo we ask someone about it then (its 820pm here at the moment so need to wait until morning). Originally it was only meant to be in until today but then they changed their mind and said Thursday. Fingers crossed we can figure out what's going on with it tomorrow and get some kind of comfort for him.

Let me know what they say.

All sorted. The Doctor is wanting us to keep the tube in for a couple more days to lessen the risk of infection in the jaw bone. We've just finished dealing with an infection in his jaw bone and after 2 months of antibiotics and a picc line dont want to go back down that track again. The doctor ended up securing the tube to Steve's nose better so it doesn't move around as much. They also gave him a nasal spray to help dry up all the mucus that was coming out. It seems to be working so looks like HBO is back on again tomorrow which is good. Feeding wise we are having no issues with it. Pretty sure we got close to 3000 calories through it today. He's lost so much weight over the last 3 months that we've been having major issues with his jaw that we are really determined to build him up.

Otherwise though since they secured the tube better, the worst of the side effects from it are going. So we just have to get through 2 more days with it at this stage. Thanks again for your help David

Hi Wendy! It's been awhile since I've been on the forum. I am so happy to hear the news that Steve passed his 3 year survivor anniversary!

Keep hanging in there. I hope things resolve quickly for Steve.

Sending hugs,

Sandy
xoxox

Ron had that tube twice and pulled it out himself twice! Not what I wanted for him to do. But it bothered his nose it was sewn to the inside of his nose and the 2nd time he told them to cut that thing right now! He hated that it was attached to his inside nostril! He used to loop it over his ear when he didn't use it and it would dangle like an ear ring. Never had any problems with his stomach but he complained bout the irritation in his throat from it that's why he pulled it out. I think only very thin liquids will go thru not any kind of food blended but we never tried it but it is a little tube.