2/5/19 - My Button Day

I had a long day. The hospital is a big car trip, a long day of running back and forth from appointment to appointment and then another long trip in the car home. So, I’m pretty pooped out. I did have a very interesting day though; a good one for the most part.


First appointment of the day was for Labs. I got six big tubes of blood drawn to check my “levels” (the doctors from my transplant team check my medicines and things…). Then, I went to the G.I. surgery department in the clinics building for my G tube switch. Mom and Dad (dad came today) met with the ladies preforming the switch for a while, first. Mom was really concerned and drilled them until she felt ok. She’s funny like that; a worry wart. I did good though. The lady pulled my old tube out, no sedation or nothing!, measured the “hole” in my tummy for a new button and then “installed” the new G tube Button port. Here is what that looks like. Remember my old long tube that hung from my tummy? Well, this replaced that.

You remember how big of a deal it is for me to be able to handle getting fed and medicines in to my tummy? Well, that fact has made today so exciting for me and my family! Hopefully this is a big turning point for me. And, hey, I can wear any clothes I want now! No more searching for button up clothes, Mom! Yay! So, yes, it hurt a little to change it and I’ll be a little sore this rest of the week, but I’m so glad we made the change. Our first feeds and medicines tonight went really easy now, too, with this new set up. It’s great!

We had to go to Herma Heart Institute and see my transplant team and have an echocardiogram done, too, after we were done at GI. That appointment went good. I was pretty low with my Tachrolimus levels (one of my anti-rejection medicines). It was a little bit scary to hear for Mom. She is really worried about rejection still. So, we increased that medicine and are rechecking my levels again on Saturday. I had a good nap during my appointment with them, so I don’t remember the rest. Anyhow, good night. It’s time for a bedtime story. -Heath

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