As many of you know, Ken, my husband has Parkinson's Disease. I've written about his situation quite often over the last ten years since he was diagnosed after falling off his bike and breaking his hip in 2006. It has been a long journey. These last five days have been one of the most difficult chapters for me in this long journey. I think it's because I'm running out of steam. This particular saga actually began about a month ago. We'd gone to Japan in late May and had a fabulous reunion with all of Ken's family and friends. We came home and because of our successful time in Japan, we decided to go to Cape May, New Jersey for an overnight. Again, it was fun - not easy - but still fun for Ken to get out and have a somewhat normal few days away from the "family room" at home where we stay most days. But the day after coming home from Cape May we began to notice his feeding tube was leaking badly and he had a bad pain in his back. We tried to cope for a few days, but finally went in to see his doctor. The doctor couldn't find anything wrong with his back but still prescribed strong pain medicine - Oxycodone. He could do nothing to help us with the feeding tube as that was not his specialty. The leaking continued and the pain continued and Ken began to lose weight, so on a Saturday when it got so bad, we went to the Emergency Room at Bryn Mawr Hospital. Through an x-ray they determined that Ken had two new compression fractures in his back. He had not fallen, but he also has osteoporosis and at this point just a little sharp movement can break those brittle bones. They advised that we continue with the strong pain meds (by now we had switched to the less harmful Tylenol 3), but also said there was nothing wrong with the feeding tube. I liken the issue of the leaking feeding tube to when you take your car into the service station with a funny noise and it won't make the noise once you get there. So we came home and immediately Ken's tube was leaking again. Badly. We went back to the E.R. and again they said nothing was wrong. They said if they changed the tube it is an invasive procedure and could cause more trauma. So we listened and came home and just dealt with the leaking every day for two more weeks. We changed Ken's shirt up to four times a day with it being wet and full of his tube feedings.
Well, this past Tuesday night in the middle of the night, Ken pulled out the feeding tube. He didn't do it on purpose. But the Parkinson's meds cause him to have vivid dreams and he is always pulling at the tubes that are keeping him alive. Jessica, our wonderful caregiver who was on duty that evening came rushing over to my temporary bedroom and told me what happened. I was too exhausted to get up and go at that moment - 2:00 in the morning and so said we would just wait until 6:00 a.m. and then go to the emergency room. We did just that - got there just at the changing of the shift around 7:00 a.m. We got into our hospital room and we were quickly seen by the staff and a bit of a snippy Physician's Assistant who replaced the tube and sent us home. I had asked her if there was any chance we could get a "button feeding tube" which lies flat at his stomach and would be much less of a temptation for Ken to pull out. But she said "No way. This is an emergency room and the only tubes we have are the long ones and you will just have to live with it. Make an appointment with your gastroenterologist if you want anything special." So we went home with a long tube sticking out of Ken's stomach. I put him on the couch, gave him some water through the tube, then plugged him into the pump that would feed him. He was cold, so I pulled up a sheet around him. In two minutes or less I looked back at him and he had pulled out this second tube. I was fit to be tied. Screaming the worst bad words at the highest of volume you can imagine. The cleaning ladies were at our house and were amazed and quite concerned at my salty language. What could we do, but go back to the emergency room.
So in a few minutes, we were packed back in the car, back to the ER, back to our room, and back with the snippy Physician's Assistant. I mentioned to her how it would have been so much better if we had the button stomach tube. She said instead she was going to sow some stitches around the tube and into Ken's skin covering his stomach so in case he tried to pull it out again it would hurt so much he wouldn't do it. Ugh.... Yumiko was with me as was Mamadou, our wonderful other caregiver. They watched the procedure as I stood outside weak kneed. Afterwards we came home. Put Ken back on the couch and tried to give him his medicine and food. We could see that the tube was not working well as it was leaking, but we ignored it for the time being. It was Yumiko's 20th birthday and we needed to just have some good family time. That night my dear wonderful friend Carol Scafuro, who was staying for a few days to help with all the trauma, made a spectacular dinner and ordered a magnificent chocolate cake. We gave Ken a little piece of cake. Although it's cheating as Ken is not supposed to eat anything by mouth, we have found that it does make life a little fun to cheat every once in a while. At 9:30 it was time to go to bed, so Mamadou and I took Ken upstairs and put him in bed. Mamadou tried to give him his medicine, but everything just came out onto Ken's stomach, including chocolate cake. We decided to wait until the morning to determine if maybe, just maybe everything would calm down. In the morning I tried to give Ken his medicine, but he just screamed. We did not want to go back to the Bryn Mawr ER, so I called Ken's gastroenterologist at the University of Pennsylvania Hospital local clinic in Radnor. They told us they had no one there who could help us. So I called the Main Line Palliative Care Nurse and she came over and tried to give Ken a little flush through the tube and everything came out on his stomach. She said you have to go back to the ER.
So, we went back to the ER for the third time in two days. They were not happy to see us. But this time we got a nice doctor who understood the problem. He said we needed to get a temporary feeding tube and then go into the Endoscopy center at Bryn Mawr Hospital and they could then insert a button tube. So, he then undid the stitches and took out the malfunctioning feeding tube (the balloon inside which should have been inflated was completely flat causing all the food to not go into the stomach, but instead leak around the tube). He then replaced it with another tube and put sticky padding around it and a little plastic synch that held it in place causing the tube to stick straight out of Ken's stomach.
I then called Ken's gastroenterologist at Bryn Mawr Hospital - We were able to secure an appointment for the next morning. The next morning (Friday) we were at Dr. Levitt's office at 9:00 sharp. He came in to the office and in ten seconds said this new tube was fine and we should go home. I got extremely snippy and said the new tube was NOT FINE. We want a button tube! He said we don't have them here. I said, yes you do, you have them in the adolescent wing and I know this because the nice doctor at the ER told me so. He said in a snippy voice, hold on and I will check. A few minutes later he came back and said, yes we do and you can go to the hospital now and have that button tube replace this tube. We sucked in our breath, said thank you and went over to the main hospital and into the endoscopy center. We had a very nice group of nurses and doctors who replaced Ken's sticking out tube with a button tube. We all came home and celebrated mightily. It took a little while to figure out how to use the new tube, but Jessica who has a wonderful brain and is a closet engineer figured it out and we got Ken some food through it and his medicine. Mamadou replaced Jessica for the night shift and we thought all's well that ends well. However in the middle of the night, Ken had tremendous gastric problems caused by all the die they had put into him at each insertion of a new tube that was used for an x-ray to ensure the tube was placed correctly. Mamadou helped with all of that, but then discovered to his horror that the button tube came out. And the balloon that was to keep it in, was again not inflated. He knew I would have a nervous breakdown if he woke me up. So he cleaned everything up and just waited until I came into the bedroom at 6:00 a.m. when he showed me that the button tube was no longer inserted.
Oh my oh my oh my. Well, we've been here before. I woke up Carol and woke up Yumiko and we got Ken in the car and hauled him back to the ER where they placed the 5th tube into his stomach, glued a littled adhesive barrier around it. Synched it tight so he can't pull it out. It sticks out about eight inches. They told us to go home and just hope and pray this one stays in long enough so Ken's skin will tighten around it.
That is where we are at this moment. It's 6:00 p.m. I am having a gin and tonic and about to take Jessica back to the train. And then we will just sit tight and pray that this nightmare of the feeding tube saga will end. Life is not easy.