A Setback

Everything had been chugging along fine until I pushed up too fast. If you recall, when last heard from, I had reduced back down to 53ml/hour but kept the same amount of formula to stay at 1,075 calories. That did increase my feeding time to about 20 hours. However, over the course of 3 days at 53ml/hour, I was feeling progressively worse, not better.

Then I dropped down to 50ml/hour, which had me feeding 23 hours a day. 50ml/hour is not uncomfortable in itself, but my jejunum is just so sore from my efforts. Only having an hour between feedings is not enough to let my poor jejunum get any rest. With great regret, I have decided to drop back to 900 calories so that I can go back to feeding for only 18 hours and hopefully start healing. Because let me assure you that a bad gastroparesis day with a sore jejunum is just a misery pit.

I am back to spending much of my day, horizontal in bed because bending my legs at the hips hurts my lower abdomen too much to be able to curl up in a fetal position. Which really sucks when all you want to do is curl up in the fetal position.

I seem to have traded in nausea for pain, and I am not a fan. The nausea isn’t fully gone, but right now the pain is more distracting. I can’t take much in terms of pain meds. Anti-inflammatories make me feel like I have broken shards of glass in my stomach. Aspirin irritates the stomach, so I am generally avoiding it. Acetaminophen is hard on the liver, so I try to use it sparingly. A heating pad sounds lovely, but the area is just too sensitive to put a heating pad on.

I have been able to start listening to an audiobook while I do my flushes and connect and disconnect from my feeds. It is one I have both read and listened to before, so I don’t have to concentrate too hard on following the story. I am too uncomfortable to focus most of the time when I am laying down. Sometimes I can listen to comfort music. Sometimes I just need a dark and quiet space. Ideally with my Dancer on the pillow next to me.

Where might my doctor and my nutritionist be in all of this? Ghosting me. I texted, emailed through the portal and called several times and left voice messages to no avail. I finally sent a Howler (angry email) to the office and they finally called me back. So after dealing with this for over two weeks on my own, I finally get to talk to someone in my doctor’s office on December 27th. Granted it is only the nutritionist, and the doctor overruled her last time anyway. But it is a start.