12/7/18 - A Cancelled Surgery

Wow! Today was exhausting. I got up bright and early to go to Milwaukee to CHW for my Pre-Op eval and some other appointments. First was the eval on the third floor of the hospital building. The Pre-Op lady come in and helped us make a plan for my scheduled GI surgery next Friday to replace my J tube with a new tube and a change the set up to a GJ. It was a quick appointment and we were off to Labs next on the second floor. At labs, since Dad was with and doesn’t like needles, Dad hung out in the corner as not to see, while I got my blood drawn to check my levels for my general check up later in the day. We had to then, rush out of Labs and get upstairs to the seventh floor of the clinic building, to the GI department for my next appointment. We met with my nutritionist about my fluids and food. We decided to go ahead and increase my caloric intake. So, now Mom will have to supplement my milk. She was very happy with my eating progress, too. She left and a member of my Gastroenterology team came in to discuss what we wanted to know about he surgery next weekend see if there was anything she felt needed to change after discussions with my parents. Mom and Dad made a push for a GJ verses just a J tube. That was a long appointment, but we felt good about everything going into next Friday. So, we went to our next appointment on the third floor of the hospital building at the Herma Heart Institute for my general check in appointment with the transplant team. We talked with them about everything we talked to GI about and them approved our plans. Then, we got to finally go home! I slept on the two hour drive home and was fresh and frisky when we got out the car and inside. Mom heard the phone ring not long after we got home and it was the GI doctor? What? She called to say that, after my appointment today, she went into my records and found who did my first J tube placement surgery and talked to them. She found out that the tube I have now, is not normally “installed” (for lack of a better term) in infants my size and that she was surprised to find out that I actually do have a GJ (technically) already!? What, again? She went on to say that I also, because I already had the J portion of my tube replace for a clot not long ago, do not need to have surgery next week! What, what, what?? Yes! This was crazy, exciting and fantastically confusing news to us! I do not have a normal GJ, I have a G tube that has a mushroom thing inside my stomach to hold it in and thru the G tube, there runs a J tube that goes thru my stomach to my gut. So, we found a tiny port on the G portion and the GI doctor said that we can go ahead and feed milk thru the G portion of my tube, around the J tube, and into my tummy as much as I can tolerate. It’s been a crazy day guys! -Heath

2R Brand LLC