I have been diligently working my way to moving back entirely to enteral feeding. Yesterday, I reached 41mls/hour. The goal is 54mls per hour. I attribute my steady progress to better pain management. Last time I had to slowly increase the speed of my feed the process was much bumpier. But, the resources provided by Stanford’s pain management clinic have been incredibly beneficial in helping me thus far. Being appropriately medicated (without opiates, which I cannot take because they slow motility) is helpful, but the pain management and relaxation techniques that they have taught me should get their fair share of credit as well.
All that effort has paid off and starting next week, I am going down to TPN just 5 days a week. The challenge with reducing my TPN at this point is not about the nutrition. That is relatively easy to manage. The challenge has been in the hydration I normally get from my TPN, which I have to make up for either orally or enterally in its absence.
These past few weeks of being on TPN 6 days a week, I have found myself mildly dehydrated when I wake up after a night without TPN. For clarity, my TPN runs for 12 hours, from 9pm to 9am. I do a flush of 100mls of water every day at 7am. I am working on increasing that to 120mls, but that is the maximum volume for a flush. So that won’t help much.
Recently, I learned that I am able to tolerate a much higher volume of oral hydration if the liquid is hot. Cold and room temperature fluids cause me pain, making it hard for me to increase my intake by much. But, I can drink an adequate amount of fluid to offset the loss of even 5 days a week of TPN if I do it by drinking decaffeinated and herbal teas. I just need to be diligent about it.
In other news, I finally got to see the pain physical therapist at Stanford. My original appointment had been on Halloween, but it was cancelled because the therapist was sick. Unfortunately, we only heard about the cancellation once we were almost to the appointment. An hour and a half away without much traffic.
Anyhoo, the appointment went differently than it would have when I was still in the fog of pain. I have been doing some standing yoga poses and stretches daily since I have been able to do so comfortably. The PT was impressed with my knowledge of yoga poses and we discussed a couple of more that we could safely add now. We also discussed some gentle core poses on my hands and knees that I could add in once I get my PICC line removed.
We also discussed increasing my walking, but she wanted me to do more flat walking, like on our treadmill. More on that in a bit. So far, All of my walking has been on hills because you cannot leave my house and not walk on a hill. David and I have been slowly exploring the hiking trail/fire road that starts right on our street. Each time we have walked it, I have been able to go a little further. It is my intention to continue exploring and slowly climbing that hill. But, I also fully intend to add some walking on the treadmill.
We have a lovely treadmill, that is unfortunately missing the part where you rest your hands and it checks your heart rate. The movers just somehow lost that piece. We are now just waiting on the insurance claim for it. But, today we confirmed that it works even without that part. So I don’t need to wait to get started.
This is all great news, and I am happy to be able to share it. But please keep in mind that I still have a chronic disease. I will have good days and bad days. Most importantly, I have learned that just because things are looking up, it doesn’t mean that they can’t all come tumbling down again. Like they have before.
What I have learned and have to continue to reinforce for myself, is that I need to do the things I want to do when I can. And be kind and understanding to myself when I can’t. Which means that for now, I am going to enjoy my ability to move my body without (or with only minimal) pain. And I am going to listen to my body’s cues and stop when I first hear the alarm bells. And not push myself too far.