CAREGIVING: Friday started out pretty normal. We ended up making a trip to the hospital for a new feeding tube.
Normal means I got to run out and buy Marty some dog food down at Brown’s, our local dog and feed store. Normal means on the way home I got a call from home that aide #2 had not arrived on schedule to relieve aide #1. And normal means yet another order of wrong size underwear (2 1/2 cases) got delivered. These are the ones that cut into Kathy’s thighs. Aide #2 did arrive. It was a problem with two dueling schedulers at her agency. Normal also means I was on the phone for over an hour trying to get our health insurance figured out. Kathy, it now appears, is an American citizen. But we are still working on the insurance crap.
Then about 3 pm or so a visiting nurse came for a scheduled visit. She started looking at Kathy’s toe infection. It seemed to be looking better. She asked me how the tube feedings were going. I mentioned that it was getting hard to give her meds without squirting all over the place, but we were scheduled to have a new tube put in next month. They usually check the tube area and rebandage it if I haven’t done it that day. I pulled the blanket back and we noticed that her nightgown felt wet, but her diaper was dry. Then we pulled up her gown and saw the feeding tube out of her stomach. I know it happens all the time. But…
Kathy was awake and wasn’t in any pain. She could answer basic yes or no questions, and was smiling when we talked to her.
The nurse called 9-1-1. Hampden police arrived first and an officer came up to see if he could help any. I explained that Kathy had Huntington’s Disease and her feeding tube had fallen out.
The nurse said “Boy you guys were here in a flash. That’s amazing.”
I had to open my mouth. I said “He isn’t with the ambulance, he’s just the police.”
The officer replied with a smirk, “That’s what they all say. We are just the police – until you really need us.”
I said “Jeez, I’m sorry. I didn’t mean it that way!”
“Yeh, I know. I’m just kidding you.”
In five or ten minutes the ambulance from AMR arrived to take Kathy to Mercy Hospital. We did change her nightgown and shirt and put a sweater on her. But, I didn’t get a chance to change Kathy and the food soaked pads she was on. I showed the first EMT the stairway and she got out a stair chair. It was similar to the one they used when she went to her first doctors appointment. The second EMT came up and asked her if she was in any pain. She told Kathy that we would have to take some of her blankets off just to get her down the stairs. She put them back on her once they got out to the ambulance. She rode in the back with her, took her vital signs and checked her blood sugar while we were parked in front of the house.
I rode shotgun. There was a sign above the dashboard that said “Do not put feet on the dashboard. The airbags could go off.” I imagine that would be very unpleasant and make me somewhat shorter. The driver was pretty funny. Actually they both were. The driver said they can spend 16 hours a day in the cab. It ends up being their office. They have little Toughbook computers they do all their work on. They are clad with metal plates and rubber. I think they can be bounced off the pavement and still work. There is a little built-in computer display thing built into the cab. Apparently, they are not very reliable as a GPS, but they use it as a lunch table.
Once we got to the ER, Kathy was wheeled into one of the tented treatment “rooms”. She was transferred to the hospital bed and the EMTs were off for the next call. A young guy came in, right away, to try to check her vitals. Her blood pressure was pretty high. I thought it was because I didn’t give her meds to her. Really though there is nothing like getting brought to the hospital in an ambulance to get your heart pumping. It went down by the time we went home. We waited for what seemed like an hour, but I really didn’t check how long. Kathy was a trooper through the whole thing. I asked her if she was comfortable and rubbed her head. That was all I could do. There was nothing in that little space. Her mouth was parched. She needed to be changed and needed a pillow for her head.
After a while, a nurse came in to ask some questions. I asked for a pillow and a swab with some water. She said she would look into it. It never happened. We waited quite a while longer. I tried to get Kathy to take a nap or at least close her eyes. With her Huntington’s she tends to stare at one spot on the ceiling for hours. In the hospital that meant staring at a square fluorescent light panel.
Then a physician’s assistant came in to talk about the tube. Until I got home and read the discharge papers I assumed he was a doctor with a lot of tattoos. I showed him the old tube. He said it looked like the little balloon that holds it in was totally deflated. It helped him get an idea of what size to install. He went away and came back with a boxed “kit.”
“You have no idea how often we replace PEG tubes here.”
I told him we have an appointment to have it replaced at the end of January. I asked, “So, this will save that trip, right?” He started to agree with me then said, “You need to talk to her doctor and see. It could be but there might be a follow-up.”
The nurse brought some iodine swabs that he asked for. The kit is sterile and has an extra set of sterile gloves that he put over his exam gloves. He tested the balloon with a special syringe. He coated the tube with surgical lubricant. At least I think that is what it was. Cleaned the old site with Iodine. Then started to push the new tube into the previous tube opening.
I did my best to comfort Kathy. She was in obvious pain but unable to scream. I didn’t need to, but I asked her if it hurt? And she said “Yes.” The doc apologized and said he was sorry he was hurting her. He explained that there is crystallized tissue that was forming in the opening, and he had to force past it. Once it was in place she was fine again. She said it was “okay.” He inflated the balloon with some saline solution, I think.
He pushed some fluid (I’m guessing it was Barium) into the tube. They brought in a portable x-ray to make sure it was positioned correctly. While they were doing that I did a mad dash to find a bathroom. Washed and disinfected my hands. And got back to her tent in time for them to roll away the x-ray cart. Then we waited some more until the nurse came back with discharge papers and instructions. I was signing forms on paper and on computer screens throughout the evening. I have absolutely no clue what they were. I asked how the x-rays looked and she said, “Oh, they are fine. You are all set to go. I just need to go book the transfer ambulance. And we waited some more. I sent update texts to Pat, Kathy’s evening aide to let her know when we were leaving.
The trip home was pretty uneventful. The two EMTs were friendly although the driver did get a little turned around trying to get from Mercy Hospital to the interstate. Then he asked me for the best way to Hampden. If were going in the other direction I guess I would be worried. I have been to Mercy several times and always get confused by the one way streets. Once we pulled up to the house I ran in to turn the lights on.
Pat pulled up as they brought Kathy in on the stair chair. They were concerned about how cold it was, and left all of her blankets on. It was awkward (and probably risky) getting her up the stairs that way. Pat put a new sheet and pads on the bed and we transferred her to the mattress. I signed the last computer form saying Kathy was delivered.
Pat got to work cleaning Kathy up. She was a mess; her pads were wet with the food; she was wet and soiled. But she was still awake and said she was fine. Marty was glad to see all of us home again too.
This is one of those posts that might help me remember
what happened and how to learn from it for the next time.