Hope and disappointment.
Hope and disappointment. Two sides of the same coin. It was a coin we had become familiar with since Joanie was first diagnosed in May of 1996.
Now, here we were in February 1998, looking at the same coin. Right now, it had come up hope, and the encouraging developments over the past few days had raised those hopes to a new level.
On Tuesday, when I got to Joanie’s room, one more of the IV pumps was gone, as was the morphine pump. Another pump is supposed to go later today. Joanie said she had a relatively bad night, until about four in the morning, but had slept well from then on till about eight.
After going for a walk, we began talking about the possibility of her getting discharged this weekend. My suggestion was we should think about staying that first night at the Radisson just a couple of blocks from the hospital so she could be more secure about getting away from here, but would still know we were only a couple of blocks away from the hospital in case something happened. We would then fly home the next day, be that Saturday, Sunday or Monday. My sister Joni’s husband, Joe had already volunteered, or Joni had volunteered for him, to come down from St. Cloud to pick up our car and drive it home for us when it was time.
It seemed to me a good plan, and one that was predicated on making her feel secure about leaving, but I’m not sure it wasn’t meant to make me feel more secure. With the things that could go wrong at this point, I wasn’t that comfortable myself about being to far away from medical help in a hurry.
About 4:30 that afternoon she threw up, and her face was flushed. I was concerned, but the nurses didn’t seem so, and I just chalked it up to her gastrointestinal track getting used to anything but water and popsicles.
We walked one more time that evening, and they gave her something to relax her and I left that night around 10:30, beginning to get a little concerned about an infection. I was fully aware that hospitals are a great place for getting one, especially after surgery like the one she had. I couldn’t help but think that the odds of coming down with an infection increased with each day she stayed there.
When I got back Wednesday morning, she was sleeping, and didn’t wake up until about 10:45. I found out then she hadn’t slept well last night, and had thrown up again this morning, and they had started giving her anti-nausea meds. She was not having a good day, and I asked one of the nurses if there was any concern about her having an infection. She told me there wasn’t, but did tell me she had a low grade fever, and as such, was “pretty normal stuff.”
Still, by late morning her day was not going well. We didn’t turn the phone on today. She didn’t want to talk to anybody, but was glad to see Ginny, who stopped by for a few minutes. She was edgy and what I called out of sorts for most of the rest of the day.
It was times like this, as a caregiver, you have to be patient with your patient. That rule applies all of the time, but is more important when things start to get intense. Joanie wouldn’t think of snapping at a nurse or aide, or her doctor, but not have a second thought about snapping at me. That was okay. That’s what my role was. I was the buffer, and I was the one she could be short with, or snap at. She needed to be able to let off what had to be an incredible build up of emotional anger, frustration and fear, and I was a safe one to let go on. As for me, when she was like that, I just went about watering the plants and flowers, recording the cards or any gift that had come in since the last time. I understood this to be an important part of this process, and I could live with it.
The setback came today in the form of the nausea and vomiting, and they took her off of any fluid or food by mouth. We wouldn’t know what the hell was going on until later that night, and Joanie spent most of the day being anxious, and agitated until they gave her some Ativan to help settle her down.
It worked, and she slept quite a bit between five and ten that night. I went over to Sally’s about five-thirty for a beer and something to eat and tried to not think that things were going south, and leaving here this coming weekend was in doubt.
Dr. Cosin stopped in around 10:30, and while we were talking to her she threw up again. I knew exactly what to do by now, having been there and cleaned her up on a few other occasions. After things got settled down, Cosin said the NG tube would have to go back in, and he left orders with Nan, Joanie’s nurse for the night shift, that she was not supposed to be disturbed until morning.
Cosin told me that her small intestine was apparently not healed enough, and putting the “nose hose” back in would at least help keep her comfortable.
Joanie was clearly disappointed in this news, and I could see it in her face. They gave her a good dose of Ativan to relieve her anxiety and help her sleep. It was beginning to have the desired effect by the time I left around 11:00 that night.
As I walked through the lobby, the same security guy I saw almost every night, asked me how she was doing, and when she might be going home. I had mentioned to him there was a good chance we’d be out by the weekend. Tonight, I told him that was now an outside chance, and we might know more tomorrow. He wished me luck as I walked out the door.
When I got back to Tom’s, I was bushed. He was still up, and watching reruns of Law and Order on this old black and white TV he had, something we did a lot while I was there, so I grabbed a beer, plunked myself down in a chair and told him I might not be getting out of his apartment as soon as I thought. He told me that was okay, I could be there as long as I needed to be.
I went to sleep that night disappointed at what had happened today, and feeling so sorry for Joanie, who wanted badly to get out of there, and was seeing the weekend chance fade with the NG tube going back in.
We might know more tomorrow.