Putting one foot in front of the other

That’s about all that it feels like we’re doing right now… just concentrating on getting through each day, one slow, slogging step at a time. My sister told me when she called today that, until Paul’s post last night, she hadn’t realized that we were still really struggling with feeding issues. Looking at the posts from the past few days, I can see where that would be the case. For me, at least, it has been easier to write about the cats, or our anniversary, or dancing, than to catalog my daily worries about Paul’s digestion, his swallowing (or lack thereof), his state of mind. Anyway, here’s today’s report, such as it is…

This morning we tried to get in touch with folks at UW to let them know that things aren’t going well with Paul’s tube feeding. Paul called Carol, the nurse practicioner in Dr. Futran’s office, who is our all-purpose hospital contact person. I called Judy, the UWMC nutritionist with whom we’ve had a couple of conversations about formula options. Neither of them were at their desks. We left messages… and then we waited. I did some work here at home. Paul slowly put some food into his body, in fits and starts due to the now familiar discomfort.

Late this afternoon, Judy called back and talked with Paul about the problems he’s having. (It was good that he spoke directly with her – rather than my talking with her – because he can give her a much more accurate and detailed description of what’s going on with his belly than I ever could.) They discussed a couple of things that we might try: switching to a different formula that she says is usually very well tolerated, and starting to use a pump, which would give Paul better control over his feeding rate than he has with the gravity-feed bags (with their cheap plastic control valves) that he’s using now. Judy said that she’d call Carol tomorrow to discuss this with her, and would then call Paul again.

At about 6:45 p.m., Carol returned Paul’s call. She said that she’d left a message for Judy, but hadn’t heard back from her, so Paul filled her in on the conversation that he’d had with Judy. I think he also told her a bit about the physical therapy appointment last week. He told her that he needs help with working out the problems he’s having with food, because he’s really feeling drained. Carol said she’d talk with Judy and call Paul tomorrow.

So, Paul should hear from both Judy and Carol tomorrow, and some sort of change should occur in the regimen… and we really, really, really hope it will make things better.

In closing, a question: what do you use for any upset tummy? We’re taking suggestions (liquids only, of course).

Worn out

(For what it’s worth, I’m passing up the opportunity to write a post about the E-bay auction for tin-foil hats for your pet, to protect them from Government Mind Probes. As far as I’m concerned, the Gubmint is welcome to all it can get out of our cats’ minds, and besides, there have been enough cat entries lately. If you need the link, I can email it to you.)

I’ve been doing the massaging of my scars, and the neck stretching exercises. There is improvement happening, but it’s small.

It’s not really enough to offset the bouts of despair I’m feeling, struggling with the feeding, the fatigue and the pains. It’s worse right now, because I didn’t sleep well last night, and that adds an extra level of “tired” to my background fatigue. I’m also behind on calories today, and my stomach is a burbling cauldron at the moment, and I don’t know what I’m going to do about that. It’s frustrating because things were going pretty well until late afternoon. Then one meal of something that usually goes down smoothly knocked everything off the track. (I hate how unpredictable this all is.)

I feel stretched pretty thin. Tomorrow I’ll be calling the folks at UW, because this really isn’t sustainable. I don’t feel confident that they have anything to offer me, but I need help. This isn’t working, not really.

Now I’m going to try having some juice, hope it doesn’t hurt too badly, try to take my evening meds, and get some sleep. Let’s hope I get more rest than last night.

Mixed day

Today was my first full day back in the office. I’m afraid that I’m out of practice at this working for a living thing. Over the past four months, I’ve reverted to type, which for me is somewhat nocturnal. I’m quite happy sleeping ’til 9:00 or so, and being up until (sometimes well) after midnight. Suffice it to say that, even though Paul gave me a ride to work, I didn’t quite make it in by my used-to-be-normal starting time of 8:30 or 9:00 a.m. I’ll do better… soon.

Once I was there, I had to settle in a bit. First order of business was removing – or at least consolidating – the stacks of drawings that had migrated onto my desk during my absence. Apparently I was absent on the day when my Tacoma project was due to be archived (read: they needed the flat file drawers for a newer project), so my desk became the temporary archive. Despite our having the computer technology that was suppposed to lead to the paperless office, we generate huge amounts of paper in my office. Reams and reams. Perhaps more than we did when we were drafting by hand.

Anyway… eventually I cleared some desk space, and got to work. And it was a nice sort of day for my first day back, with many of the things that I like about my job: digging into an interesting and complicated project, lunch with my coworkers, some typically left-leaning political conversation. All in all, a good day. And the bus showed up only a minute after I arrived at the stop.

I arrived home to find that Paul, on the other hand, had not had a good day. I got here just a little late for the spacefood-induced nausea and vomiting, but he was still in the I-hope-that-it’s-over-but-I’m-not-sure-yet aftermath. Damn. Not a thing I could do to help… and I really don’t like feeling helpless or out of control. And so I got, in order, cranky and teary. Cranky – or, more accurately, angry – about how little education and assistance we’ve received from the folks at UWMC regarding tube feeding. Teary from frustration, because the digestive problems Paul is having seem so random, and he feels that nothing we try leads to consistent improvement… which makes it hard to keep trying. His having to struggle to get enough calories via the tube, and throwing up when, for some unknown reason, that goes wrong, is unacceptable to me. I just don’t know, right now, what to do about it.