A day in the life.

For those of you who are curious about my post surgery life I wrote this post.  If you’re looking for something light and funny, you might want to skip this one.

For starters you need to understand that I returned from the hospital with more parts than I had when I went there.  I now have a feeding tube, a drainage tube, and a machine that pumps nutrients directly into the port to which Picard was attached. All of this requires care and attention.

I start my day between 7 and 8 AM, whenever I wake up.  Some nights are better than others, but getting a good night’s sleep with the tubes and machine attached is challenging.

I get up and read the paper with Anne.  We visit awhile but I soon get tired so I go back to bed and finish off the poor night’s sleep I got.  After this final round of sleep I’m good to go.

Meanwhile, Anne has given Molly a couple of different sets of meds and coaxed her to eat whatever she can. Molly is doing much better than when we almost lost her when she was hospitalized during my surgery but still has some kidney issues. It has taken a lot to get her back to eating somewhat normally.

When I get up I begin taking my Chinese medicines which I do throughout the day. My body is totally out of sync and early morning is often challenging.  I take everything very slow.

A problem I’ve been experiencing is my metabolism is out of whack and I am extremely COLD.  I’ll wear two T-shirts, a lined shirt, a heavy sweater, park myself in front of a space heater, and I’m still cold. At the same time, Anne will be about to pass out from the heat. Fortunately, this situation appears to be correcting itself.

During the morning I am lugging around a feeding machine that is housed in a green backpack.  I’ve been attached to this gizmo since 6 PM the previous evening.

Around 10 AM the machine beeps at me to say “You’re fed.  You can unplug me now”.  This begins one of the busiest times of the day. We open up the back pack and shut down the feeding machine’s computer.  Then Anne detaches me from the machine, flushes my PowerPort with a hypodermic syringe, and I am free for a few hours!

The next step is to maintain my tubes. To protect those of you who are squeamish, we won’t go into any detail here!

I then take a shower which is more challenging than it sounds.

Next, Anne changes the dressings on my tubes.  The changing of the dressings is a complex ritual that is one of the more unpleasant aspects of this whole regime, mostly because it hurts when Anne pulls up the tape. It was even more painful when the nurses did it, so I have no complaints.

We then have a little lunch. One of the nice things is that we are now able to eat this meal together. Sometimes, we even eat the same thing.

I am working in increasing my ability to eat solid food.  Right now, I can only eat small amounts of soft foods with negligible fat (the latter has to do with the chyle leak). I have successfully eaten chicken noodle soup, mixed canned fruit, apple sauce, and peaches.  Tomato soup and bread with jelly didn’t go so well.

After lunch, we often have an appointment with my Chinese medicine doctor/acupuncturist or the home health nurse comes by. If not, Anne tries to run a few errands like going grocery shopping. Lately, we have actually managed to eke out a couple of free hours in the afternoon. Yesterday, we actually watched a movie.

I am trying to spend more time walking since exercise improves the recovery time from surgery.  This is challenging since I have little stamina or endurance.  I am trying to walk around the block at least three times per day.  I move very, very slowly, but at least I am moving. Which is what counts.

Around 4 PM Anne begins to prepare the formula for the machine that feeds me.  She removes a feeding bag the size of a hot water bottle from the refrigerator and inserts special nutrients and insulin into the bag using a hypodermic syringe.  She then hooks it to the pump, powers it up, and puts the whole thing in my special back pack. It is quite the project.

I eat another little meal around 5 PM and then accompany Anne and Molly on the first part of their walk.

Around six PM, Anne reattaches me to the feeding bag which is quite the little science project in itself. Anne then gives Molly some more meds and fixes a little dinner for herself.

I’m very tired in the evening and mostly just sit in my chair. Last night, I was actually able to talk to Anne.

Since sleeping is such a challenge, around eight PM I take some Tylenol and a very hot soak.  This makes it easier to sleep, which is something I desperately need by this point. While I’m soaking, Anne coaxes Molly to eat some more.

I’m in bed before 9 PM, and I think Anne goes to bed soon after.

And that’s it.  A typical day.  It is definitely a “one day at a time” kind of experience with each day being a little better than the last.

Not much better, but better.

Thanks again for all of your emails, blog comments, cards, and silent prayers. A very special thanks for the vacuuming, the purple dahlias, the pharmacy run, the chicken Parmesan and stuffed zucchini, and the pumpkins on the porch! You know who you are!