CAREGIVING: Kathy has had some setbacks lately. Separated by a few days of normal. Followed by a false alarm. I guess I forgot to knock on wood.
Keeping it Down: Last weekend it was a stomach issue. She kept regurgitating her feeding formula; or her meds and water; or both. That is dangerous because it can go back down into the lungs and start aspiration pneumonia. Many Huntington’s Disease patients die from pneumonia. I’m pretty sure this problem was the amount of water I was giving her at one time with her meds. I am supposed to give her a liter of water over the course of a day. The hospice sent a nurse to check things out on Sunday.
By the time she arrived, I had pretty much figured out the problem: too much water on a too-full stomach.
Earlier that week I changed the med schedule from four times a day to three times a day. Since that is when I give her the water it meant that I gave her more water at a time. The other issue was I was getting a little lazy. I wasn’t checking her “residual” before giving her meds and water. That is a way to see how full she is since she really can’t tell me.
I turn the food pump off and siphon her stomach through the feeding tube with the syringe. If a lot of liquid goes into the syringe it means she is pretty full. I need to wait for it to go through her system as poop or pee. Most times there is nothing or 15 ml at the most. Then it will be ok to give her a portion of her water. Sometimes though the syringe registers 30 ml or more. I should wait an hour to let it be absorbed.
I have gradually been cutting back on her feeding rate. Before this latest bout of vomiting I had cut it back to 20ml/hr. When she started on the peg tube a year ago, her pump was as high as 65ml/hour. Then she started having problems. She simply can’t absorb and process that much food any more. So, now I try to split the water up even more. I’ll give her some water first thing in the morning. Then give her the first batch of meds at 9:30am mixed in water. Then another bigger batch of water around 11 or at noon. Then meds with water at 3 or 4 pm. The final meds and water are usually at 10pm after her aide is done getting her ready for bed.
The Other Cheek: With the regurgitation weekend behind us, we had a few nice regular days. Her morning aide washed Kathy’s hair on Wednesday. I got some shopping done and puttered in the yard a bit. Marty finally went to the vet and to the groomer on Thursday. On Thursday night Peg, Kathy’s aide got my attention. “Hey, Peter, Kathy’s cheek is swollen again.” Kathy’s left cheek and neck were swollen. This looked like a repeat of the same infection from several months ago. This time it is the other cheek. Because it was on the side of the bed next to the wall, I didn’t notice. Kathy also had a slight temperature. I reached the on-call nurse. By then the pharmacy was closed. I told the nurse I was dreading talking to Kathy’s doctor because she might not want to keep prescribing antibiotics to keep Kathy alive. The nurse said even in hospice they use antibiotics all the time. As long as it doesn’t require going to the hospital for massive IV doses Kathy can stay within hospice. I decided to wait until our regular nurse comes in the morning.
After I hung up I had a serious discussion with Peg. It was serious because it was heated. I was attempting to explain Kathy’s doctor’s point of view: Kathy is not going to get better; and some things are just prolonging her life. The last two times the doctor has seen her, Kathy has been asleep and unresponsive. So, the doctor is as concerned with quality of life issues; as she is about her health. Peg was upset that we weren’t taking her to the hospital; or getting antibiotics from a 24-hour pharmacy; and that we were waiting until Friday. Kathy was comfortable, she was smiling and breathing fine. I did give her a Tylenol suppository.
Peg and I were fine after. She got her point across. No wet bed pads were thrown at me; or at her. She is very protective of her clients. A very good thing that I appreciate.
The next morning Shannon, the nurse came to check on Kathy. We were her first visit. She called Kathy’s doctor about an antibiotic. She talked to a nurse first. Doctor Jackson called back right away. Shannon knew I was worried about the doc’s reaction. The doctor wanted to think about what antibiotic to prescribe “this time.” She would fax it in to the pharmacy. In the meanwhile I was to give her Tylenol for her fever; and cool wraps on the neck area.
The rest of Friday was fine. Kathy was comfortable. Betty, the morning aide came and couldn’t imagine how she didn’t notice the swelling the afternoon before. Join the club. I talked to my sister Barbara about her trip to visit my brother Paul. He is in a nursing home in Ohio.
After I hung up I looked at the clock and thought
“Crap! It’s 6 o’clock! The antibiotic isn’t here.”
The Antibiotic: I called the hospice again. The on-call nurse reached the pharmacy and found out they couldn’t find a prescription. Since the doctor had to decide what to recommend, the hospice didn’t really know what was prescribed. The nurse guessed it would be the same antibiotic that was prescribed before: Augmentin. The delivery guy showed up about an hour later and I got to work. I crushed it and mixed it with some water.
The phone rang again. It was the same on-call nurse, at the hospice. The pharmacy found the correct prescription and it was Keflex, a completely different antibiotic. So, she asked me to wait until the morning to give Kathy the right medicine. She said she would tell them to put a rush on it. Keflex is given four times a day, so it is less convenient.
Saturday was another day of watching and waiting for the courier from the pharmacy to come. I called them and all they would tell me was “It was out for delivery.” I think because Hampden is considered east Podunk, we were the last to get deliveries. I finally got the first dose into Kathy around 3:30pm.
False Alarm: In the meantime a new problem popped up. Kathy wasn’t urinating. Peg was very concerned, because Kathy was totally dry Saturday morning. She is always totally soaked in the morning. And she hadn’t peed much the day before. Another call was placed to the hospice. I kept checking to see if Kathy had ‘gone’ by sticking a few fingers in her pull-ups; but I didn’t stick my hand in very far. Around 6pm the Beth, the hospice nurse from last weekend’s vomiting crisis, came to see if Kathy needed a catheter.
We asked Kathy if she was uncomfortable. She whispered “No.” I kept asking if she had peed yet. She mouthed “No.” Beth got a catheter ready. I cut off Kathy’s underwear and she said “It looks like she urinated.”
She pointed to a yellowish area. “I guess it does.” I said. We kept chatting about pee and whether it was; or wasn’t. (To pee. Or not to pee.) When we changed her, we realized she was very wet. Once we got the wet diapers out of the way, Beth said I could have a catheter put in for convenience: Cleanups would be easier. I decided convenience wasn’t a good enough reason. There is a risk of infection too. I felt kind of stupid about the whole thing. But, I was glad it was a false alarm. She said it is hard to tell how wet a person is. Kathy wears two pull-up briefs and a maxi-pad inside it. So, unless you pull back the pants it is pretty hard to tell.
She also helped me realize that Kathy might not produce as much urine now. Although I give her about the same amount of water, I have cut her food back; and that is all liquid.
The swelling seems to be going down quickly. I figured out a schedule for giving her meds and antibiotics; with the right amount of water; at the right time. So, live and learn. And knock on wood.