Chapter Twelve: A Decision to Make
By the Fall of 2012 Allison’s choking and vomiting problems were getting worse. One day while the occupational therapist was visiting Allison had a particularly bad time of it. When the spell did not subside, the OT insisted that she had to go to the hospital. Allison was very upset and agitated about this. The therapist said that we had to go to Samaritan Hospital in Troy because the visiting nurses were affiliated with them. I preferred to go to Berkshire Med, but not wanting to make waves I complied. We drove to Samaritan with the OT following closely behind to make sure that we really went. Samaritan was an inner city hospital and not a nice place. Allison was so very agitated that they admitted her. It was not a pleasant stay and the next day I signed her out.
Allison’s endoscopy had been inconclusive and another one was scheduled at Albany Gastroenterologist Associates. This one showed some abnormalities and an appointment was made with one of their doctors. We met with Dr. Sheehan who brought up the possibility of a feeding tube. He explained the procedure to us, gave us some literature, and told us to think about it for a while.
The subject of feeding tubes elicits strong opinions from people, usually negative. A few people told us to do it, most said don’t. Forever a contrarian, Allison decided to do it. The procedure was scheduled for February 2013.
In the months leading up to the procedure, the visiting nurse so frightened Allison about feeding tubes that she began to have second thoughts. A month before the scheduled date Allison asked me to cancel it. Two weeks later, she changed her mind again and I called to reschedule. Allison went to the back of the line and the procedure was rescheduled for early May 2013. The feeding tube business must be good.
As we waited for the feeding tube, life went on in Stephentown. In mid January 2013 Allison had another bad choking spell and became very upset. I called 911, which brought out Stephentown’s Rescue 1. The chief Rick was a calming influence. Rick was about 80 years old, but looked and acted about 50. He suggested that they take Allison to Berkshire Med to be checked out. We spent a few hours in their ER where Allison was given some sedatives and sent home. The following week Rick stopped by the house to see how Allison was doing. Only in a small town would that happen!
Dr. Rosas prescribed ativan to try to calm Allison when she was eating. It seemed to work. The choking incidents became fewer and less intense. Allison was living on Ensure, Boost, and ice cream, but she was gaining weight.
I asked for another nurse as she had so frightened Allison about the feeding tube. She also insisted each week that Allison take off her shoes and socks so that she could look at her feet. Allison did not have diabetes or any other foot problems and did not like this at all. Beth was assigned to be Allison’s new nurse.
I also asked to discontinue the occupational therapist. With her strong personality, she had not been a calming influence on Allison. Huntington’s patients have a very short fuse, and Allison didn’t need people who upset her. The Samaritan Hospital fiasco had not endeared us to her either.
Allison and Gail continued to work on the Dynavox. This became kind of a fun task for Allison and some very funny phrases made their way in. The physical therapy sessions were also a lot of fun for Allison. She especially liked the exercise called “row row row your boat.”
Allison’s aides schedule increased to 15 hours per week. I was thankful as living in Stephentown makes a trip to the supermarket or pharmacy a three hour excursion and it was sometimes hard to get back before Dawn was scheduled to leave. Overall, except for a couple of hiccups along the way we were still very happy with the services provided by the VNA.
Sadly for us, Dawn decided in March to move to Arizona to take care of her mother. Allison was assigned a new aide named Terry who was also a great fit for Allison. She also had four children and seemed to care very much about Allison. Allison was allotted 25 hours a week with Terry.
Winter turned into Spring and the day of Allison’s procedure was rapidly approaching. She went for some preliminary workups and waited patiently. This time Allison was not apprehensive and would not change her mind.
On the morning of May 5, 2013 we drove to St. Peter’s Hospital in Albany to have Allison’s feeding tube put in. The first time a feeding tube is inserted the doctor feeds it through the patient’s esophagus and down into the stomach. It is then pulled out through the abdominal wall. The procedure was scheduled to take about one hour with a two hour recovery period before Allison could go home. I waited apprehensively in the waiting room. I started to worry when after a couple of hours the procedure was still going on. Being so young, Allison had very strong abdominal muscles and the doctor was unable to pull the tube through. He had to call in a surgeon to help.
Dr. Sheehan decided that Allison should stay overnight in the hospital to recover. One night turned into three before Allison was released. The initial tube feedings did not go well and Allison kept getting sick. We had been sent formula, an IV pole, and gravity feed bags via UPS but had to figure out how to use them.
Allison slowly got used to the tube and was happy that she could still eat ice cream and other soft foods if she wanted to. Another benefit of the tube was that I no longer had to give Allison the twelve nutritional supplements that she was taking daily. The formula contained all the nutrition that she needed.
Allison was able to tolerate a fairly high flow rate and didn’t have to spend a lot of time tethered to the bags. This allowed her to partake in fun things like the hot tub. She slowly gained weight and actually looked quite healthy. It was the summer of 2013 and time for the Miata again! We had conflicting reports and didn’t know if Bob and Midge would be coming to visit.
Allison really liked Terry and I appreciated the time off to rest or fiddle around in the yard. Allison’s spirits were good and she was sleeping well. She had built up an impressive DVD collection and spent a lot of time watching old shows and movies. She was still playing Virtual Families.
The nurse, physical therapist, and speech therapist were still visiting and we were happy with them all. Allison was still in the clinical trial, but sadly it would be ending in the Fall.
August brought about Allison’s 31’st birthday. She had taken a liking to Kenny Rogers and we drove out to Indian Ranch in Webster, Massachusetts to see him in concert. I had purchased wheelchair accessible seating for Allison. A rather large man had decided he wanted to sit in her reserved spot and when he refused to move a kerfuffle broke out between him and Rob. Security came and escorted the man away. We were offered free tickets for a future event but declined. After all, we did get to see the show and quite enjoyed it.
Allison had seen a story about a pot belly pig in Chicopee, Massachusetts who had gotten into a little trouble with the law. “Kevin Bacon” was living with an elderly lady in her apartment. The city of Chicopee did not allow this and Kevin was evicted and banished to a foster home. Allison wanted to go see Kevin. and we drove out to Chicopee. Allison asked if she could have Kevin for her birthday and, Kevin came home in a dog carrier. A pig was not going to live in my house and Kevin went to live in our barn. I built a paddock for him to exercise in. We soon decided that Kevin needed a friend and Lucky, a miniature horse from the Catskills, joined Kevin in the barn. Allison enjoyed sitting out on a bench to watch them and feed them treats.
Bob and Midge announced that they would be driving up from Georgia in early September. We hoped that would be a good finale to a great summer.