Saturday, July 6, 2013

Seek Alternate Routes

In our last installment I was waiting to go into surgery to have my feeding tube installed.

That went reasonably well. It seemed to take me a long time to recover from the anesthetic. I went through three different recovery rooms. The first was a PACU (Post-Anesthesia Care Unit) like when I had the biopsy. I don't even remember that room this time. Then a more relaxed room. But that room is part of Day Surgery and closes at 8:00 so they moved me to the "general recovery room" which is open 24/7. I was pretty groggy through all of it.

The ride home was much better than after the biopsy. No carsickness. I was still groggy through that part, too.

I had gone to the hospital in shorts because it's freaking hot here in Boston. But I was a little chilled when I dressed to go home. The nurse gave me a pair of scrub pants and also a hospital blanket for the ride home. Maybe I'll get a bill for $500 for each :)

I'm usually good at anticipating things like what I might feel like after a procedure. But this time I was distracted by other things and hadn't given it any thought. I was quite surprised by how much abdominal muscle pain I had that night and the following day. It felt like someone had just punched a hole through to my stomach!

Fortunately I had painkillers. And Wonderful Wife as usual took great care of me. She arranged pillows to create a recliner-like position in the bed in which I slept quite comfortably.

So, now I have a 12" long plastic tube protruding from my stomach. Yippee!

Actually, I am excited to have it because eating is really a struggle. Most foods are quite disgusting to eat now.

That is the hardest part for me so far. Especially knowing that it's going to be like this for at least a couple of months. I'm fairly depressed about it at the moment.

My treatment team ceaselessly stresses to me that I have to continue to eat through my mouth as much as I can so my swallowing muscles don't atrophy. I wonder if I can get some hypnosis therapy to convince my mind that the revolting glop in my mouth actually tastes good. Or at least not bad.

But enough of that. Let's talk medical procedures!

Before the surgery they described to me the fascinating way they install the PEG.

First they insert an endoscope down my throat. Then they turn on a light at the end of the scope and locate a suitable location for the tube placement by viewing the light through the skin. Once they identify the site they make a small incision. They then attach a wire to the endoscope and withdraw the endoscope back out of my mouth pulling the wire along with it. Finally, they attach the wire to the feeding tube and pull it back down through my mouth and stomach and back out the incision. At the end of the feeding tube is a retention bumper. They pull the tube out until that bumper is against the stomach lining. Then they put a clip on the outside against the skin of my abdomen to hold the tube tightly in place in the hole while it heals.

The weird thing is there are no "seals" anywhere! I guess the stomach wall (which is muscle) and the abdominal wall (which is muscle) have enough compression to squeeze against the tube and provide a seal.

Here's what the end result looks like.

Well, not really. I thought some people might be squeamish. Click on the image to see what my PEG tube really looks like.

To feed, I open the cap and stick a big syringe on the end of the tube. First put some water in the syringe and then release the clamp to let the water rinse out the tube. Then start pouring food into the syringe. I was warned to control the flow by holding the syringe at different heights. Letting the whole thing empty into my stomach in seconds would be just as uncomfortable as gulping it down too quickly. So it takes about 15 minutes to get in a container of food.

For now I've used it a couple of times with Ensure Plus. The nutritionist is ordering a month's worth of a product called IsoSource 1.5. Wow, $60 per meal! I'm going to be eating well!

Big Sister and her colleague encouraged us to ask for different kind of feeding tube called a Mic-key button. We tried, but the folks at Brigham and Womens' Hospital who place the tubes are stuck in their ways. Wonderful wife and I ran out of emotional energy and time to fight that battle. The tube needed to be placed before the second round of chemo next week.

Here's a picture of a Mic-key. At a glance you can tell it would be a lot more comfortable and convenient, since there is no tube attached to it when you aren't feeding.

C'est la Vie.

At least I have a tube, and it will be quite helpful.

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