No applesauce in our house.
The happiness of getting Joanie home was tempered after a short while with the reality of the situation. Now my job as caregiver would take front and center of my consciousness.
Even though she was home from the hospital, she was still a very sick girl. She had a lot of healing left to do, and was dealing with infections, and getting back to eating regularly, coupled with dealing with the Miami Pouch and the ileostomy. She was also faced with the process of getting her strength back after 25 days in the hospital.
I felt the stress of these first days home, far from the doctors and nurses who were so familiar with what she had been through, and if something were to go wrong, I didn’t know if anyone in Bismarck had experience with a pelvic exenteration patient. There were doctors who knew about an ileostomy, and I assumed there had to be a urologist who might know what a Miami Pouch was, but I didn’t know, and that added to the tension I felt during the first weeks home.
I did have Dr. Carson’s number and Dr. Cosin’s number as well as the number for the nurse’s station on 7C, and had been assured I could call anytime if felt there was something out of the ordinary they should know about.
Another factor I had to deal with was this was a woman who was not only trying to come back from a traumatic, life changing surgery, but was still trying to adjust psychologically and emotionally to those changes, plus the fact there was the cloud of recurrent cancer hanging over her. I knew enough, because of my background, that this was a process that I couldn’t rush her through. The adjustment was going to be made on her terms, and on a time table that she would determine. My job was to be there so she knew she wasn’t alone.
My tasks now were to do some of the same things that nurses did for her in the hospital. Included, were making sure she got the meds for the two infections she was dealing with, along with the drugs they had presscribed to combat nausea and pain. I also made sure the thermometer was right, and the blood pressure machine had fresh batteries. Given the infections and all, I thought it best to keep an eye on those numbers.
It was also my job to make sure she got some exercise. In the hospital it had been fairly easy to get her to take walks, because the nurses were prodding her to do it, and she wasn’t going to go against their wishes. On the other hand, once we got home, I would have to cajole, wheedle, coax or otherwise exhort her to take walks with me. She could find it easy to put me off, saying it was too cold or windy, or she was just too tired. I finally put it to her like this. Today we’ll walk to the end of the driveway and back, twice. Tomorrow we’d go a little further. That approach didn’t work. During the first week home, we walked but once despite my urging. It was too cold.
Getting her the infection meds proved to be a challenge. The pills, the ones that cost over $740 bucks, were large enough to choke a horse, let alone a woman who had a gag reflex that would have them ejected in seconds. I hit upon the idea of grinding the pill up and putting it in applesauce.
Joanie liked applesauce, and her tender stomach seemed to be able to handle it. I improvised a mortar and pestle using an expresso cup and the back of a spoon. I would cut the pill in half and then grind it up as best I could before incorporating it into the sauce. She would reluctantly eat the mixture, but at least she had ingested the medicine. After the regimen was complete in a week, that was the last time you ever saw applesauce in our house. I didn’t care, because I wasn’t fond of it anyway, but at just the mention of it, Joanie would stiffen up, and she made it clear to me to never bring any of it back into the house, even if we were having pork chops.
She was eating well the first few days, but she continued to be tired and her back was bothering her. She had a couple of episodes of throwing up, but when she got back to taking Reglan, that seemed to clear up.
The Miami Pouch operation was going well, and I had even changed the ileostomy pouch without to much too much difficulty. We had been visited by the Home Health guy, and he had gone over everything we had been told at the hospital. He was encouraging the idea of independence, meaning Joanie should be thinking about changing it herself. I knew by looking at her when he said that it wasn’t going to happen. She told him she was not ready to handle the “appliance” by herself yet. She would leave that to me at least for the time being.
After we had been home just short of 14 days, I began to see something that troubled me. She was in more pain than she had been in earlier, and the tylenol didn’t seem to take care of it. I called Dr Carson, and she prescribed a muscle relaxer that seemed to help, but there was something else brewing. She was having a vaginal discharge that wasn’t right, and smelled awful.
On Monday, the 23rd, I called Dr. Cosin and told him what I saw going on. Joanie had thrown up that morning, and later in the day threw up again. Cosin told me to bring her back down this week. He said there might be an infection related to the discharge from her neovagina.
Joanie didn’t have a bad day on Tuesday, but we had decided that we would fly down on Wednesday, and be back on Thursday.
As we would discover, we were being overly optimistic, and we would find ourselves back up on 7C.