To Rule Out Or Not To Rule Out...

Olivia did well drinking the barium, and they saw what they were looking for. Unfortunately what they saw is what they’d hoped to rule out. He actually told me that Olivia had a malformation in her small intestine (red flag-they don’t usually tell you anything in person). The radiologist wanted to call Liv’s doctor to consult before we left (red flag). Her doctor wasn’t available, but a team from Peds GI was coming over to discuss the cases from the day, so he consulted with the 6 member team when they got there.

After he filled them in they came to talk to me. We went to a private area to talk (red flag) about what the “malformation” meant. The condition is actually called small intestine malrotation. They explained that during a baby’s development (in utero 4-6 weeks) the intestines form outside the body, since there is not enough room in the abdominal cavity, and then it basically retracts back into the cavity when the baby is big enough. Usually it winds itself back and forth across the abdomen, but hers only stayed on her right side. This can be dangerous as it can flip over and cut off circulation to everything below. Apparently this is a major concern because the one GI doctor said, “… she has survived with it for 13 years” (RED FLAG). It would not take much to cause the intestine to flip, and the only symptoms are green vomit coupled with possible pain. If that ever happens, it would be an emergency. Dave read a bit more about it, and discovered that it would actually require emergency surgery.

They recommended seeing a surgeon (which we already have an appointment for on Monday) (HUGE BLESSING!) to discuss having it corrected. They said some surgeons will agree some won’t so it depends on who we see. I will be strongly advocating for the procedure to be done at the same time as the G-tube is placed. PLEASE PRAY THIS WILL WORK! I don’t want to have it be separate, as she’ll have to go under anesthesia yet again.

As a side note, this malrotation was a random occurrence, separate from her Cerebral Palsy. I asked how it could’ve gone undetected for so long – she’s had so many x-rays. They said it was because it would only show up with the Barium, which she has only had for a swallow study.

I am amazed how it seems like every visit we’ve gone to over the past few weeks we’re looking for answers, which we do get, but it’s always coupled with far more questions. To say this is complicated is an understatement. I am grateful for so many people praying.