Brave Little Boy

Trey and I arrived to Seatac late last night. Little man did very well on the plane. As we got closer to landing he loved looking at all the bright lights below us.

Trey had his gastric emptying study done today. Trey gets four tube feedings a day now, where we offer a meal or snack and replace what he doesn't eat or drink. In discussion with his dietitian we decided to try and space them out by 4 hours to hopefully increase his appetite. But this has been unsuccessful. Trey could go 4-5hours without eating or drinking and have absolutely no desire to do either. He also has had issues tolerating his tube feedings which range from 6-7 ounces during a feed. This next symptom may be too much info for some but we check his NG tube placement by pushing air into his tube and listen with a stethoscope for air to make sure its in his tummy before we start each tube feeding. Afterwards we pull the air back out and hours could pass and he will still have huge amounts of previous tube feedings in his stomach. So it was decided that it would be best for Trey to have this procedure done to see if his stomach is having a delayed response to emptying.

So nuclear medicine placed a radioactive chemical in his formula and we pushed about 2 ounces down his NG tube. These chemicals measure the speed with which food empties the stomach and enters the small intestine. There are no side effects from the study. The radioactive material won't be absorbed by his body and then will be eliminated in his poop.

The difficult aspect of the study was once the radioactive material was pushed down his NG tube, the tube had to be pulled shortly there after because it could alter the test results due to the NG always leaving a small part of the stomach open. So since the little man still doesn't eat or drink enough yet the tube had to be replaced at the end of the procedure.

The study took around an hour to complete but Trey had to hold very still throughout so he had to be strapped down to a board but was able to have his head and arms free. But you can imagine confining a 15 month old is a task in itself. But with the help of his two wonderful grandma's, books, toys and Mr. Raffee the task was a success. There were a few tears in the beginning for him and myself but he did EXTREMELY well. He was so brave!!!

During the study his little body was pushed part way into this CT like scanner machine and there was a small screen attached nearby that showed constant black and white images of his stomach and intestines and a clock that displayed the remaining time left.

As the last minutes and seconds came to an end replacing the tube was the last obstacle for Trey. Mommy replaced the tube with brave Grandma Karen, and the wonderful tech assisting me. Replacing the NG tube is never easy for Trey or I. As a mommy you hate seeing your child scared or in pain and knowing you are the one inflicting that upon your child leaves for a whole lot of mommy guilt. As a peds nurse this is procedure I probably wouldn't think twice about it but doing it on your own child leaves room for lack of confidence and self doubt. I think my biggest fear with each replacement is that Trey wouldn't trust or love me the same. But the innocence of a child amazes me. After the tube was in place Trey was still his cuddly self. His resilience and care-free spirit inspires me everyday.

We will find the results out on Wed. when we meet with his GI specialist. Trey has one more test tomorrow. Please keep the little man in your prayers. It would be much appreciated:)