Jennie,

I had a lot of pain too immediately following the PEG insertion but the good news about this pain is it decreases quickly. For me, anything that involved any stomach miscle at all was agony for the first 12 hours, the next day was better (I could at least stand up wihtout being in agony), then there were a few days where it hurt to laugh or cough but I was lots better, a week later there was hardly any pain at all. My tongue surgery (which sounds similar to Erik's)and neck dissection was also surgery I healed from relatively quickly. Give it a few more days (and be sure he keeps up on the pain meds) and he'll be much better.

One practical suggestion about the people trying to visit his room (or even call). Make a phone list and/or email list of the people who are closest to him and will want to know how he's doing or to visit and then delegate one person in that group (not you--you have enough on your plate) to call or email the rest of those folks with updates about his health *including* whether visits are a good idea at the moment.

If you do this, its also a good idea to make clear to everyone in the group that you are doing this not because he and you don't want direct contact with them but because calls and visits can be overhwleming when someone is sick (I realized this when my brother was talking about having "been put on some sort of B list" with a friend fighting cancer--because he was getting updates from a friend of the friend isntead of the friend herself. I suggested to him that maybe *everyone* was on that "B list" right now simply so she wouldn't be overwhelmed and saw the lightbulb go on).

Hang in there Jennie. There are parts of this that do seem nightmarish--but the good news is that lots of us have been through that same nightmare and are holding you in our thoughts and here to give you and Erik support.

Nelie

Jennie - one thing the medical team forgot to emphasize when John has his PEG put in and suddenly was taking very strong pain killers was the constipation factor.

He basically went from no drugs to morphine and they didn't really give him anything for the inevitable constipation that goes with narcotics until after he was in a lot of pain from it. It took a few days to get sorted and I still get cross when I think about because it was unavoidable.

Perhaps this has been addressed with your husband but wanted to raise it just in case.

Mary

Jennie
I wanted to send my good wishes to you and your family. You have a tough road ahead.
Nelie is right,I found making a family friend the "designated buffer" for all well wishes and health updates to be of great help.
It gets tiring to have to try and explain what is happening to a multitude of callers, and you need all your energy for Erik and the kids.
I am so glad you found this site early , I can honestly say these guys saved my sanity.

Our best wishes to you guys
Marica

Just a "hi" to let you know I'm thinking about you and Erik. Jennie. Also by day 5 of John's hospital stay, I was pretty exhausted, so you watch out-don't let yourself get too tired. Amy

We are home!!! I wish I would have seen the post from Mary earlier, he got so sick from being constipated, it seems so strange that the docs and nurses dont think about that until it is too late. Our last two nights in the hospital were pretty tough, Erik even started vomiting, which as you all know is very dangerous due to the aspiration factor. I have a question to all of you with PEGs did you get very nauseous when they started food. Erik cant tolerate even 15 ML in his stomach through the tube, if nausea is normal, does it work itself out? He is already down 26 lbs.

There have been a ton of posts here related to use of PEG's but they are roughly divided into those that had a drip bag (me) and those that put food in with a syringe. (I just used my syringe for flusing the tubing and injections of meds into the tube.) Start with a quick search of the boards under PEG and that will give you the jest of it. For me the bag had to be filled with equal amounts of water as food (Ensure for me) and it had to be a room temperature. Speed of drip was critical and too fast yeilded instant nausea. Think in terms of an hour or more per meal drip. Also do this sitting up, laying down means it's gonna come up, and afterwards, stay upright for at lest 30 min. Others will post more, but this should give you a start. Also, don't forget daily cleaning of the opening and applikcation of antibiotic oitment to head off infections around the tube. Also a must is flushing the tube with serveral syringes of water after each use to keep it clear.

Jennie
Our problem with nausea during tube feeding was so severe that Pete ended up being fed through his port. Hopefully you will not have to go that route.
Let us know how things go after using the advice Brian has given you.
Marica

Ok so we think we figured out what the problem was, the food they were trying to give was wrong for him. Ultracal, it has a ton of fiber and the fiber was making him sick. He is just getting some feeling back in his neck and face, but the pain is bearable. My new question is about the swelling in his neck, they took the drains out and he is really swollen on the surgery side. I know that the lymph system is the drainage system for the body, but does the edema ever go away? Does it find a new route? He is sitting up most of the time, only laying while sleeping at night. He says it feels really heavy. We have a hot tub, is he able to get into it with the PEG? I dont think so, but we didnt ask the doctor before being discharged.
I love this site, and Erik has been visiting too!

Hi Jennie and Erik, hope you are both fairing well. Just wanted to share that my John had to experiment with his syringe feedings to get them slowed down enough that his stomach would tolerate the amount he needed each feeding.And we cut the suppliment with water during each feeding. As to the swelling, I think that's pretty normal and can go on for quite a while. John still has pockets on his face that are swollen every morning and stay that way during the day. Don't know alot about the hot tub, except that I would be concerned about raising his body temp. while he is in a weakened condition. Hot tubs can be dangerous for healthy people. Take care of yourselves. Amy

Hi Jennie and Erik,
I had a PEG tube for quite almost a year and it took me more then a few weeks to adjust to it. I got very sick to my stomach at first, when they were using the jevity. We switched and I started using a generic Walgreen brand that settled well on my stomach. I used a syringe, not the hanging bag, and I didn't dilute my feedings with water. I got so comfortable with the feedings that I would do them anytime, anywhere. My 5 year old grandaughter even learned how to do it and thought it was a GREAT game to "feed" Nana.
I'm 44 and had the left side of my lower jaw removed due to a stage IV tumor, along with removal of the lymphnodes on the same side. I then did 6 weeks of radiation. My surgery was extensive and I had drains, tubes and TONS of staples and stitches in my face and neck. The swelling was dramatic along my jawline and neck and it took about a year or so for it to all go away. Now my neck is as smooth as it as before.
Keep Erik on this site as much as you can, this site is what brought me back from a deep depression following my treatment. The information can be scary at times but more often the support is what we need.
One day at a time for both of you. I promise you that it will get better.
Love,
Minnie