Replacement Tube

It was another adventurous week for our family.

Ali took Brady to see Dr. Hess (the surgeon) on Monday. He said that the G-J tube looked good. He wanted Ali to make an appointment in 6 months to replace the tube with a larger one.

Ali took Brady to see Dr. Tim (our pediatrician) on Wednesday. He increased Brady's daily food intake from 760 ml per day to between 800 and 850 ml per day. Ali will schedule another appointment in two weeks for another checkup and some vaccinations.

On Tuesday night we noticed that Brady's wound seemed to have more fluid around it. On Wednesday morning there was a large bulge in his stomach near the tube. That area was also hard and red.

Dr. Tim took an X-ray of Brady's stomach. He said the feeding tube was kinked. It was going straight up into his stomach (causing the bulge, hardness and redness) and then looped back down into his stomach and intestine.

Dr. Tim called Dr. Hess and they agreed to leave it alone for one day to see if it straightened itself out. If it wasn't better on Thursday, Ali was to call Dr. Hess to have the tube replaced.

We noticed that Brady wasn't acting like himself. He was crying most of the day on Wednesday and seemed very uncomfortable whenever we moved him.

On Thursday, he seemed very lethargic and quiet. He was spitting up his feedings and his medicines. The area of his stomach was still swollen, hard and red.

Ali called Dr. Hess and they said they had an opening if she could make it to the hospital in 45 minutes.

Ali and I then went into scramble mode. Ali's mom took Casey to his ECFE class and made it home in time to get Ava off the bus. I needed to get my last two classes in school covered by other teachers. I was also supposed to be the only coach on a bus to Bloomington Jefferson for a track meet. After running around school for 15 minutes and getting everything covered, Ali met me at the high school, and we drove up to the hospital together.

Of course, we raced to the hospital to find out there was an emergency surgery in our time slot. We waited there for two hours before they had an opening for Brady.

Ali was able to be in the room during the procedure, but I was asked to wait outside (they only have room for one parent). Brady was on a large, moveable bed with an X-Ray machine. There were three television screens. Instead of moving cameras, they moved the bed to get the picture they wanted.

They didn't put Brady under for the procedure. They just used some cream on his stomach to help numb it.

They removed Brady's existing G-J tube. They then used the X-rays to help position the new tube. They turned on the X-rays periodically as they guided it into position. By turning the machine on and off, they are able to control the amount of radiation and keep Brady safe. Brady cried a little when they removed the tube and put the new tube in.

Ali remained at the head of the bed the entire time. She wore a lead vest, glasses and a thyroid guard to protect her from the radiation. She kept dipping Brady's pacifier in sugar water to keep him sedated.

They played a Baby Einstein video on an iPad for Brady. He was a little squirmy, but he did a great job for about 30 minutes on the table.

After the procedure, we went up to the 4th floor to visit with the social workers, nurses and therapists from the NICU. They were excited to see us and hold Brady. The OT did a quick evaluation of Brady and said he looks fantastic.

Brady slept almost the entire day on Friday. He was uncomfortable whenever we tried to feed him. It seemed like gas was causing him the pain.

By Saturday, Brady seemed to be back to normal. The highlight of this weekend was watching Brady starting to get a personality. He is smiling, cooing and really interacting with us. He was awake almost the entire day on Sunday and acting very much the same. It was a great ending to another eventful week.

The school district is coming to work with Brady on Tuesday. The home care nurse (Children's Hospital) is coming to work with Brady on Wednesday. Brady will start his treatment at Gillette Children's on May 22.

Please continue to pray for Brady's healing.

With love,

Tyler, Ali, Ava, Casey and Brady