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May 29, 2024 update.

 Originally posted on social media May 29, 2024.

"I was discharged 1 month ago today. It's been great to be home. Settling into a routine that includes nightly 14 plus hr feeding by NJ tube, waking up every 3 hours to add in the pancreatic enzymes. I have mixed results some nights the nausea, and restless sleep is overwhelming, but can be follow by a perfect sleep filled night. More good nights are coming I can tell😊

Today I also returned to the hospital to have the liver bile duct drain/stent removed, and pickup another 30 day supply of feed fluid🙄 Slight tenderness around the site but the drain removal didn't hurt👍

Still waiting for the fistula to finish healing, it's taking longer than expected but things are heading in the right direction.

I am lucky to have such great a medical team taking care of me. They listened to me, acknowledged my concerns, allowed me to have input into the plan and to move forward at a pace I felt comfortable with. It didn't always flow smoothly, there were disagreements, I was a pain in the ass at times, and I had to push back a few times, standing my ground on issues.

I think listening to my body, and documenting issues really help keep track of things and is proving to be very valuable in my recovery."

May 29, 2024, feed supplies.

 
May 29, 2024 picture before the PTC drain was removed. Installed Feb 22, 2024.

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