We are back from our travels, and it is nice to be home. But Dancer’s absence remains a keenly felt hole in my heart. I feel like I am letting his memory down by not giving him the tribute he deserves. But I am so exhausted and numb I don’t feel like I could give him his proper due. I still can’t bring myself to look at pictures of him. So it will be a bit longer until I share the wonder that was Dancer with the world. I don’t know if the tribute will be worth the wait, but he certainly was, given that we didn’t see him for the first few weeks he lived with us. But that is a tale for another time.
We have learned that travel is possible, albeit a bit bulky, given how many medical supplies and redundancies that we have to pack. This most recent trip I forgot one of my pain medications. Fortunately, It was one that did not have any withdrawal symptoms. I left it behind on a Saturday and I didn’t hear back from my palliative care NP until Monday. I don’t seem to be any worse for the wear for not being on it, so that it one med that I can strike off my list.
I had been trying to wean myself off all unnecessary meds when I found myself suddenly needing to add several, so this is a small victory. Speaking of meds, I have now been on 30mg of Cymbalta and I think (hope/wish) that it may finally be working. We tried upping my feed from 25 ml/hour to 26 ml/hour overnight while we were in Lake Placid and I didn’t wake up in tears. But I was still white knuckling it. David didn’t think I was getting any more nutrition than I was spending gritting my teeth through it. So I returned my pump speed back down to where it had been.
I want to try increasing my pump speed one more time before I meet with my psych NP on Wednesday. If I can’t pull it off, I think I am going to concede defeat and go up to 60 mg of Cymbalta and see if that does the trick. I am beyond ready to start the long, slow slog to full, or at least, adequate, nutrition. Based on my previous experience, I was only able to increase my speed by 1 ml/hour every 3 days. So even if I succeed in my experiment, it will be months before I get back to a sustainable level.
I am drinking 1/3 of a container of the 1.4 formula at least once a day regularly now. And I am getting two servings in more than half of the time. That gets me to 1,100 calories, which does make a noticeable difference in my brain processing power. I am so depleted, the impact is short lived, but it is certainly an incentive to keep pushing it in.
The combination of the added exhaustion from the travel and my malnutrition has left me really bored. Sit coms have become too much. I can watch short clips of humor on YouTube and that’s about it. I can barely read anything of consequence. I am even struggling to watch baseball when I get tired. It is all just so cognitively overwhelming. Any and all content becomes an overwhelming noise in my brain that just exacerbates my exhaustion. I loathe it.
My appointment with the nutritionist was rescheduled to tomorrow. So hopefully she will help me come up with a feasible and sustainable plan to keep upping my nutrition. I can’t think of anything more than keep drinking my formula, but what do I know. Regardless, it will be nice to speak with a nutritionist who has experience with enteral nutrition.