CAREGIVING: Yesterday was Kathy’s followup visit with Dr. Jackson, her new primary doctor at Riverbend. The ambulance guys arrived on time. It was drizzling a little.
I guess the ambulances are all equipped differently. This one used a tiny “stair chair” that looked more like an uncomfortable beach chair than medical equipment. It was similar to this blue one except I remember the rear wheels were more like the rollers in the front. It didn’t roll worth a damn except on our kitchen floor. She was strapped in very securely and they tried to make her as warm and comfortable as well as they could. They had to readjust the straps just to get her down the narrow stairway because she started to lean over to one side. They were afraid they would be dragging her against the wall on the way down. Once they got outside I realized the ambulance wasn’t by the front door like the last one. They were behind my car in the parking cutout by the street. The driver said he didn’t want to transfer her from the chair to the stretcher in the middle of the road. She did get a little rain on her face. At least it wasn’t bitterly cold out.
They transferred her to the stretcher and locked her in and we headed off. I sat in front again because I didn’t realize there was enough room in the back for a second person. The EMT had to do a little suction on route, so I was just as glad I wasn’t in the way. The two EMTs were very gentle and friendly. They gave me an extra hospital sheet and blanket when we got home, too. These sheets (with a green stretchy band around them) are the only ones that seem to stay attached to the bed when you move a patient around. They are worth a post by themselves.
Antibiotics: The actual appointment went pretty well. This time we were in an actual examining room – not a hallway. Kathy’s eyes had been watery for nearly a week. Mary Kate, our nurse thought it might be a mild eye infection. I started giving her antibiotic eye drops and it looks better, according to Dr. Jackson.
She also lost the nail on her left big toe. We were all hoping it would fall off anyway. It had that ugly toenail fungus thing that you see on TV ads. Then the nail was hanging on by a thread. I got tired of watching it and I cut it off. Unfortunately, when the doctor took the bandage off, it had a small infection around it. In case you are keeping up with medical terms the toe nail infection is called Paronychia. She prescribed Cephalex (Keflex), an antibiotic to be taken for a few days. The bad news is antibiotics kill the good bacteria in the body. Translated: Kathy could get diarrhea. She said I should give her “any probiotic I have in the house”. I told her the only thing I have is yogurt. She said that will work if I put it in the feeding tube. (I tried it today. I made the mistake of using undiluted yogurt. We both had a yogurt bath. Tomorrow I’ll thin it down.)
Meds: We talked again about reducing Kathy’s throat secretions and gunk. I learned the big word term for it is Sialorrhea. I have been giving her Meclizine and Benadryl, but the doctor wanted me to ask the Huntington’s Clinic what they use. Robin, at UConn mentioned Atropine drops that get put under the tongue. In the end Dr. Jackson decided to try Glycopyrrolate (Robinul). Her reasoning is that is will cause fewer cognitive effects. That’s another way of saying that – in Kathy’s case – it won’t knock her out. I can still use Benadryl if needed. They faxed the new prescriptions and refills to Rite Aid Pharmacy. I decided to switch from Stop & Shop. Rite Aid will deliver. With winter here I would just as soon not go out in the snow for a bottle of pills. The nurse at the doctor’s office also faxed in some other stuff that should have gone to a different supplier. I’ll figure that out.
Palliative Nursing: The big thing I asked about was whether it is time to switch to palliative care from regular home nursing. The doctor had talked about hospice during our first visit. I didn’t think I was ready for hospice even if Kathy might be. But I realized that palliative care is the step before that: treating symptoms for comfort and not necessarily towards getting better. It’s not going to happen.
I talked about it with Mary Kate, our visiting nurse from Trinity. She thought it was might be a good idea although she would no longer be our nurse. Trinity Home Care doesn’t do hospice and palliative care. She said palliative nurses can do more “stuff” and do it quickly. If we need something like a piece of equipment, they cut through the red tape. Stuff like the hospital bed that took weeks, gets approved in a day. There would probably be more nursing visits and more physical therapy and some volunteers to help out. And when it is time to shift to hospice, it will be the same nurses. She said she enjoys working with us, but she wants what’s best for Kathy. So, if I decide to change she said, “I get it.” Dr. Jackson is referring us to Mercy Hospital and I expect a call soon about that. She said “you can always change your mind, too. Nothing is written in stone.”
The EMTs got her back in the ambulance. By the time we were home it was raining and her face got pretty wet. Kathy’s next appointment with this doctor will be in six months. I thought that was a sign of confidence: that she will have Kathy as a patient. And in June it will be a year from when Kathy returned from her stay in the hospital.
Social Security: Kathy’s citizenship was still deemed dubious by the Health Connector website after faxing all kinds of crap to them including the social security card. This morning I called them and determined that they never received anything. They had given me the wrong number to fax it to. I faxed it again to the new number and I am supposed to call back on Tuesday to continue enrolling both of us.
Tomorrow morning I go to get my annual fasting blood work done. So, I better get some sleep.