History Lesson 201: Invasive Testing Begins

After carefully reviewing Stanton’s history and severe feeding issues, the GI in Mobile wanted to be sure he covered every possible issue. In order to really diagnose, investigate and rule out anything happening inside Stanton’s body, the GI ordered lots of tests and procedures.

We first went to the outpatient imaging center at the University of South Alabama in Mobile for an Upper GI and Small Bowel Follow Through. I thought I had prepared myself for this test by reading all I could find on the internet…but my mommy emotions kicked in, which I didn’t account for. Just thinking back to this day is painful for me! Stanton was completely traumatized and terrified as techs tried to force him to drink barium sulfate. Our whole issue is feeding, so why they thought he was going to drink it is beyond me?!! He was then papoosed to a straight board and had a feeding tube crammed up his nose and down his throat with no pain medication administered. They force fed him the barium for 20 minutes and then he endured 20 more minutes of x-rays! Of course Stanton was so upset that he was completely soaked with sweat, covered in poop and aspirated while crying and gagging and ended up with pneumonia. AWFUL DAY. The small bowel follow through showed a section of Stanton’s lower bowels not filling with food, so we had to go back the very next day for an ultra-sound and more x-rays.

We traveled back to the clinic the following week for a swallow study. Again – this test required drinking some barium. We couldn’t get it down him at all! Stanton just flat out refused to cooperate, especially after his PTS (Post Traumatic Stress) kicked into high gear. Why someone couldn’t just combine the two tests into one awful day, rather than two, is something that makes a lot of sense to me….but has obviously never crossed the minds of the powers that be at the hospital.

The next set of testing required Stanton to be put to sleep. I am no longer afraid of doctors putting my child to sleep and will always be extremely grateful. It really is, and I know this may sound crazy, much more relaxing for John and myself to know that Stanton is asleep and unaware of what’s happening. While asleep, Stanton had an upper endoscopy, several internal biopsies taken, a 24-hour pH-probe inserted, a fluoroscope, and a colonoscopy. The specialists basically examined every part of his gastro system possible. The x-ray taken for the pH-probe placement also showed that Stanton still had pneumonia. All the nurses and doctors were nervous because they had performed surgery and all these tests on a sick, lung-compromised baby. So they gave Stanton lots of oxygen treatments and antibiotics. We spent the next 24 hours at the Ronald McDonald House keeping Stanton highly entertained so he wouldn’t pull the ph-probe out of his nose. The following morning we went back to the hospital and had it removed.

After two weeks of waiting, we learned that the testing showed damage in the esophagus. “That’s all?” I asked the GI. The GI explained that although he thought Stanton’s testing would reveal eosinophilic esophagitis. It didn’t prove concretely anything. Not even severe reflux episodes. My heart sank with this news. Back to the drawing board. Knowing there is something wrong with your child and not finding the answers is a tough moment. Realizing you’ve tortured your child and yourself, not to mention your finances, and still have no answers is indescribable.