I am here to tell you that, by some miracle of fate, I can report that by yesterday afternoon, we both had heat and hot water (and David and I had both had an opportunity to shower) and I had a new tube in place.
The propane issue was one solely of communication. It turns out that the propane company was indeed working with estimates (although we haven’t been here through a full winter yet, so they were not estimates based on our own previous usage behavior) and that is why our propane tank was empty despite being on the automatic refill plan.
It also turns out that because we are on the auto refill plan, the propane company would have come out Sunday and put 10 gallons in the tank, restarted our appliances and then come back Monday to do a complete fill. But their outgoing message was not at all clear on that point. And we only found out when I finally called the emergency number again later Sunday evening and spoke to the answering service. By then it was almost dark and we live up a big hill and it would not have been safe, in my estimation, to make them do the emergency fill. We had space heaters and could wait until Monday morning for them to come.
We had asked the visiting nurse that comes on Monday to make us her first appointment at 9am because we knew there was no chance in hell that we would have heard from the IR doctor. The propane folks were coming between 8:30am and 9am, what could possibly go wrong?
Of course, everyone arrived at once. While David ran around the house with the propane guy, restarting the heater, hot water heater and stove and the smell of propane everywhere (we were assured that it was safe and not flammable) the nurse and I sat in the living room doing our usual Monday morning routine. Not long after she started taking my vitals, I got a call from the IR doc telling me to come to the hospital at 1:30 for a tube swap.
But–you knew there had to be a but, right?–the other shoe had to inevitably drop, right? When we arrived at 1:30, I learned that the appointment had been scheduled as a G tube removal. I tried to explain to the woman who checked me in that I actually there for a G-J tube swap, but she just told me that I should tell the nurse when they brought me in for the procedure.
David and I sat in the waiting room until my name gets called. As the nurse and I are walking toward a room for me, I explain the issue. He is flummoxed. A G tube removal can be done pretty much anywhere. Just deflate the balloon and pull. In fact, he brought me into a large storage room with a gurney and computer smack in the middle of the room. A fine place to pull a G tube.
Inserting a G-J tube is a whole different matter. It requires fluoroscopy machines that allow the Interventional Radiologists to visualize the anatomy and thread in the J tube through the stomach and into the jejunum. Unfortunately for me, there was already another patient on the fluoroscopy table.
The nurse left me in the storage room and went to go check the order and to see if they even had a G-J tube in stock. While he was gone, two staff members wandered into the room I was waiting in. While I just sat there on a gurney, they looked at me for a moment and then went back to their conversation, did what they needed to do, and left. Clearly, they had expected this to be a quick in and out procedure.
After a short while, the nurse returned and confirmed that the order was indeed for a G-J tube swap and he had no idea why or how it had been scheduled as a G tube removal. He confirmed that they had a G-J tube in stock and that the doctor was going to be able to fit me in right after he finished with the current patient. The nurse sent me back into the waiting room so I could hang out with David while the doctor finished up.
After about 15-20 minutes, the nurse returned and wheeled me into IR and voila! I had a new tube. Well, it’s not quite that easy.
When my tube is swapped endoscopically, I am put under light anesthesia. I just wake up after a nice nap and it really is voila! When the tube is swapped by IR, the doctor is going in through my stoma. I get some local lidocaine, but other than that, I am wide awake. And it can get quite painful internally as the doctor makes several attempts using guide wires to locate my jejunum and guide the new tube in. And there was a nurse behind my head who dutifully asked me my pain level at several intervals. But even when it got bad, she said nothing, nobody did anything.
I have encountered it every time I have been in a hospital setting. I am asked my pain level. It is dutifully recorded and nothing more is said. More times than not, no medication is offered. I truly cannot understand why they bother to ask if they have no intention of doing anything about it.
Regardless, it was amazing to get home from the hospital yesterday and collapse on the couch in our warm house. And I was thrilled when I was able to pick up my tube feeding exactly where I left off. I will take one more day at 49ml / hour because I remain a bit sore from yesterday. But then up to 50ml/ hour. Getting close.