With EoE, Allergies, Asthma and a G-Tube

Changing of the Mic-Key

Happy Valentine’s Day! I love my Tubie!
What is the best thing that has happened with tube feeding? What benefits have you seen? What progress would you like to celebrate?
1. Gage has gained his weight back plus a few pounds.
2. I now know he’s getting all the nutrition he needs. I don’t have to worry about if I’m feeding him enough of the right things.
3. I would like to celebrate the fact we’ve made it through the first two months. It is still an adjustment period. He still asks for things daily that he can’t have.
I would also like to celebrate the changing of the Mic-Key button for the first time yesterday. Gage was so scared. He cried in fear of the pain he might have. It was super painful for him to get the button, he remembers that pain. No matter how much we assured him it wasn’t going to hurt, he didn’t believe us.
We made our way to the new hospital. I put Tinleigh in her stroller with her food bag, Charlie’s food bag, Gage’s feeding tube backpack with supplies, my purse and a bag of coloring stuff and vtech toys. I had no idea what kind of wait we would have. As I was checking in a nurse called us back! I was excited there was no wait in the waiting room. So we chugged on back to our check up room. Got Gage’s vitals and the nurse left us. Not even ten minutes later the RN, nutritionist and another nurse came. They all introduced themselves and we went over Gage’s EoE history. Then, it was time. Gage was already sitting on the table. The nurse asked Gage to lay back so she could see his button. As she was checking it out Charlie covered his head with his coat. I asked what he was doing. He came out from under it crying. Oh boy here we go. So as the nurse gathered things to change the button the RN left. She promptly came back with another nurse who asked Charlie if he would like to go for a walk. He said YES! He was crying because he was scared for Gage. Oh those boys have a wonderful bond. The nurse even coaxed Tinleigh away from my leg. They assured Gage it wasn’t going to hurt. They even showed him how the balloon blows up once it’s in him. It was cool. A lot tinier than I had envisioned. Then the RN said ok Gage here we go. Before I knew it I was looking at a hole in his tummy then it was over. Gage sat up with his huge beautiful smile and said “It only pinched a little”. He then jumped off the table and ran out the door looking to show Charlie. He and I were both relieved. I was a bit dizzy and hot from seeing the hole. Strange. I was so proud of him not wincing once or throwing a 4 year old fit. He just let them do it. Luckily they agreed to time up his next button change with his scope so I won’t have to do it. However, I did need to see how it’s done just in case it would fall out. G-Tube
The RN and I then spoke about his next scope. I mentioned Charlie and Tinleigh would be in at the end of the month and they both needed scoped as well. She said no problem and went ahead and scheduled them all 3 on the same day at the end of March. SCORE! It will be our first triple scope day! Wait, I probably shouldn’t be celebrating that. th
Gage’s appointment time was at 3 and we were on the road heading home by 4:30. That was in a huge hospital which included walking to the parking garage and getting out. I hope it’s always like that.
Yes, we did have one hick-up. How could we not. On our way out we stopped to use the restroom. I changed Tinleigh on the fold down table. Once I was done I put her on the floor. Then I bent down to pick up the diaper I had thrown down and at the same time pushed the table up with my hand. Well, the latch didn’t catch so as I was standing from my squat position the table slammed down right on top of my head. Thought I was going to pass out or need stitches. Luckily neither happened.

February 14, 2013 - Posted by | LIVING

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