Feeding Tube Awareness Week Day 2 The Conversation

Certain conversations will forever be ingrained in my memory, one of them is the conversation that I had with my GI on July 9th.

After erythromycin had stopped working we were scrambling to get my symptoms under controlled. Reglan another gastroparesis med (that had many scary side effects) failed to work for me and we had maxed out my dose of Periactin. I was only getting in about 300 calories a day and feeling it. To add to the mess I started not tolerating ensure. And trust me after throwing up ensure you will never want to touch it again.

After increasing my dose of Periactin we gave it a few days to kick in but by July 9th I had to call and after explaining where I was at with the nurse I received a call back from my GI within an hour or two. Whenever a doctor calls you back that fast it is not a good sign (although in all fairness my GI does usually call my back in 24 hours).

She asked how I was and I as always replied "okay."

"Well it does not you are doing okay based on what I was told, eating 300 calories a day is not okay" she gave me a much needed dose of reality. And she was right I was not doing okay at all, I was barely hanging on. She mentioned that maybe erythromycin would work after I hadn't been on it for a few weeks or I could be admitted, which would probably end up happening. I didn't have the energy to try erythromycin again on the chance it worked and I told her that. She brought up IV fluids and a feeding tube and I knew it was time.

The next day I was admitted to CHOP for an 8 day hospital stay. During that stay I became a tubie. Even though I was far from strong when I was discharged I was about a million times stronger than when first admitted. In the 7 months since that conversation I have been nothing but thankful for it. Thankful to have been admitted. Thankful for my feeding tube. Thankful we did not wait a day longer.
The NG

It has not been easy to say the least. I have been through an NG tube, 5 NJ tubes, and one GJ tube (but I am on my 4th J part). I can say it has been worth it. Worth all the ER trips, hospital admissions, and enough trips to IR to be besties with all the nurses. Its been worth it because its given me a chance at my life. A life I would not have without a feeding tube.

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