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).