I usually write these on Sundays, but this one couldn’t wait. I just passed what I consider to be a hugely significant milestone. I crossed the 1,000 calorie threshold for the first time in 2 years! I still have a ways to go, but somehow being able to count my nutrition intake in 4 digits rather than 3 feels like we have crossed yet another hurdle.
In other good news, Tuesday I went out for the first time since I got my tube on November 22nd. It was to go to a doctor’s appointment, but who cares, it got me out of the house. The weather was cool and drizzly. In other words, the weather was perfect. I walked .5 mile each way. David walked me there, but I was comfortable enough to walk home alone.
The doctor was exactly what I needed. To recap, I have run out of my thyroid Rx. I know that I need my I need my thyroid meds recalibrated, but I am not at my full nutrition levels, so getting a blood test now doesn’t make a lot of sense. Fortunately, she agreed. Gave me an Rx and told me to get bloodwork in 7 weeks. That would give me time to ramp up my nutrition and we will know what my thyroid levels are at that dose.
Continuing on the good news train, my resilience is continuing to build. I walked a mile and had a doctors appointment and I was not stuck in bed for days afterwards. I did feel meh and nap a bit more, but I remained a generally functional human being.
In the “we are still making progress, but the road is bumpy” category, I am struggling with increasing the pump speed. I was pretty uncomfortable at 55ml/hour, but we tried bumping me up to 60ml/hour last night and I felt like someone was making sausage in my intestines while I was still using them. It was uncomfortable enough that I had trouble falling asleep. And while I am not having diarrhea per se, I have had several bowel movements a day since I bumped up to 55ml/hour.
My nutritionist is not thrilled with my progress. In her words, “I still have a ways to go.” I am supposed to get up to 100ml/hour, so she has a fair point. I checked in with my fellow tubies and they reminded me that we are all different and we are the only ones that can dictate the speed and increases at which we are comfortable. I will follow their advice and just take it as slowly as my body needs to go.
I could just drop back to 55ml/hour, but I am loath to give up those last few calories that push me over the 1,000 calorie threshhold. Once again, David solved the problem by suggesting that for a couple of extra hours of feeding, going from 18 to 20 hours, I can drop back to 55ml, but maintain my current formula level. I will happily tether myself for an extra couple of hours for such a win/win scenario.
In other news, the eagerly awaited venting bags arrived. The bags are huge (twice as big as my feed bags) and their tubing is easily twice the diameter of Etisarap (my own feeding tube). They are also heavy. But, the ability to comfortably vent is so important, that I will find a way to make them work. I always have the backstop of the expensive Farrell bags that are actually designed as vent bags. My nutritionist says that she will arrange to get the script if I decide that I want to try the Farrell bags out.
I am so so glad that you are getting increasing nutrition!!!!! I know you have a ways to go, but the improvement is already clear. Having more energy! Having more endurance! These are big improvement. Here’s to continuing progress.