It is dawn (around 5 AM) and we are up…normally, I fail to see many sunrises. I am a sunset person as most of you know…but we are awake and it isn’t by choice.
I have just spent the last few hours trying to clear my husband’s PEG tube. It is the tube that was surgically placed in the stomach so that he would not have to have the NG tube down his nose all of the time. And, right now, I am scared and mad as hell.
It seems that my husband added dehydrated onions to his clear diet last evening. That means that these bits of onions swell up and return to a solid piece when they are in liquid….and at 4:30 AM, he woke me up to tell me that the PEG tube isn’t draining and he feels a lot of pressure.
I didn’t know that he “doctored” his soup. I think that he did it when he knew that I wasn’t around. I know that he wants food and he feels so deprived because he can’t eat anything solid. Clear liquids leave a lot to be desired if you have been someone who loved to eat. I can understand that in my head, but cheating like this can be disastrous and I am angry.
I irrigated the tubing and it was definitely plugged with something. When I saw the onion bits return through the tube, my husband confessed his crime. That only made me angrier. I told him that if this thing plugs, there will be a pain that makes all of the other pains look like a walk in the park. I know that frightened him, but I also know that what I said is true…and I know all that was done to get this tube in place and it is all undone over an ONION….
I feel so guilty when I get upset with him. I feel so bad because I know that he feels that this cancer is robbing him of everything that he loves. But, I am still his wife and his nurse and I am afraid for him and the pain that he has caused himself over the sake of “flavor”.
In some ways, ignorance is bliss, but this time, ignorance has the potential to harm him so. It isn’t because he didn’t know in his head that eating things would cause problems. He was instructed. I have instructed him and told him what would happen. It just isn’t real to him until now. Now, may be too late to save the PEG tube.
If this tube fails, he will have to have his NG tube down his nose and I don’t know if they can remove it again. The other risk is that the tumors have grown and closed off the way to the surface of the abdomen and in that case, there is no other options….but if it is an onion problem, then he will have to bear the guilt of hurting himself and me…
I can see him outside walking in the morning mist. I know that my words have hurt him and they also scare him…I know that he is praying and asking God’s forgiveness. I also know that he is trying to walk around to stimulate movement in the digestive track.
Cheating seems so minor at the time. It was too great of a temptation to pass up. But, as in all things, cheating costs a greater price than what is discerned at the time. Ask Eve.
I know that I am thinking of myself, too. I know that if this tube fails, that his care escalates to a higher level. It isn’t that I can’t care for him at that level, it is just more time and more work for me. It is a selfish point of view, but it goes to my desire to keep things at a minimum as along as possible.
We would be at this point at a later date. The tumors can grow and block the tube’s way to the surface of the abdomen and we would have to go to the NG tube to decompress the bowel, but we didn’t have to go there just yet. We could have more time that is unencumbered by all of the tubes and equipment. We could keep things as normal as possible for a little longer.
Now, his grandson, who is coming here for Father’s day will be afraid of him. That tears at his heart.
I don’t know what to do. I have done all that the hospice nurse would do for him…I irrigated the tube with Coke so that the carbonation and the acid would dissolve as much as possible. I hope that he doesn’t become nauseated. That is a sure sign that the PEG tube is closed and will not function….
Time will tell. I can’t go back to sleep now. I will have to keep watch and make sure that I can get to the doctor quickly. I am praying that he will not have to pay the price for cheating. I am praying that God will forgive my anger and my selfishness. But most of all, I am praying that the tube will become unplugged and this worry and frustration will lift off of me and my husband…