Hello Jennifer, I am sure others may have better and more complete info but my here is what I know so far. Before I start, should probably say that I am new to this, not use to "posting" things and not sure of all the details, terms and abbreviations. My wife was diagnosed 6/20/08 with Stage 1 tongue cancer, two weeks later was changed to "at least" Stage 2 and not sure right now what it would be considered. A CT scan showed that the tumor was larger than originally thought (now at 2.5cm and 1cm thick). Her surgery was 7/31/08 and came home from the hospital 8/10/08. The pathology reports show that the cancer had spread to the lymph nodes and is expecting to start radiation and chemotherapy in approximately another 4 weeks to allow for healing from the surgery. She came home with the feeding tube stitched in her nose but they removed her trache the day she came home. I do not know how much ofher tongue they removed, from what the surgeon had drawn for us before the surgery, I expected about 1/3 would be removed but when I look in her mouth now, it looks more like 2/3 of what is visible is the forearm flap.

From my whole 2-1/2 days as care giver, here is what I can tell you we have experienced. The feeding tube has been the easy part, since hers is stitched in her nose, we do not have to worry about the correct placement. We were told that most are taped in place, then you need to mark to make sure that you have not accidentily pulled out of place. The main thing is that you are always starting any feeding or medication with water, then the food or medication, then following with more water to make sure the tubing doesn't get clogged. Since our supplies have arrived, just using big syringes that have ends that fit the tubing ends for the water/medicine and we are using "gravity feeding" for the food. Just the bags that look like IV bags that we hang up and connect to the feeding tube. There is a little wheel that we use to regulate the flow which we were suppose to take an hour per feeding. Rinsing the bags and syringes after use.

We were expecting to come home with the trache in place so went through all the training. The last days in the hospital, Pam had a trache plug that she could plug the whole in the trache that would allow her to talk as well as breathing through her mouth and nose. The cleaning of the trache was pretty much cleaning around the outside with saline and cotton swabs. Removing the inner "tube" to clean with a brush. The hardest part for me was called something like (I know this is wrong) lamass where you needed squirt some saline in the tube to help get all the "congestion" out. When you would squirt it in, you need to time it with the breathing and knowing that they are going to cough makes it really tough. Our nurse was cracking up watching me try to do it. When I picked my wife up the next day to bring her home and she didn't have the trache, I told the nurse that she must have told the doctor about how poorly I had done in training. Anyway the trache isn't that bad either if you can get past the fact that you are right there in a persons throat and as long as the (for lack of a better word) phlegm doesn't bother you. They did suggest notifying the city service provider for 911 that there was a person in the home with a trache so if they received a call with no talking, they would know right away that there could be a problem.

I will say, our nurse and before that our Dr. had made it sound like when Pam was released from the hospital that she would be able to care for herself. I may be under estimating her but can't see leaving her alone at this point. I would be interested to hear how long others have needed to stay with their loved one when they come home from the hospital.

Anyway, hope some of this is helpful and wish you and Callie the best.

Tom