My son is understanding more about his Alagille doctor appointments

He perceives more about his illness and the various procedures

Jay Sandstrom avatar

by Jay Sandstrom |

Share this article:

Share article via email
Main banner for Jay Sandstrom's column,

Every six months, we see our gastrointestinal (GI) team at the children’s hospital. We’re fortunate to have continued to see the same two providers we met when my son Finley was admitted to the hospital for testing at 6 weeks old. After he was diagnosed with Alagille syndrome, our journey with our care team has continued since that admission in March 2021.

I don’t take for granted that we’ve mostly seen the same doctors throughout Finley’s life. When this column is published, we’ll have just celebrated Finley’s fourth birthday. At Finley’s recent GI appointment, the doctor was commenting on how she remembered our meeting when we arrived at the hospital and how amazing it is to see Finley’s progression over the years.

One fact we all realized at this appointment was that, at age 4, Finley can understand what we’re talking about. He knows why the doctor pushes on his stomach. He can chime in, in his unique way, about feeling itchy. He knows exactly what to do when we first go in the room; he nicely stands on the scale and lines his feet up to get his height measured. He exclaims “arm hug!” when the blood pressure machine comes out.

While I wish he didn’t need to be practiced at these skills, he’s making the most of his experience.

Recommended Reading
Main banner for Jay Sandstrom's column,

Creating understanding around my son’s Alagille syndrome

A greater awareness at each appointment

Now I’m not trying to say that he’s always sitting and attentively listening. He’s still a rambunctious 4-year-old. He horses around while we talk through our updates with the doctor. It’s pretty amusing, and he somehow manages to straddle the line of entertaining and distracting quite well.

A boy with blond hair who's wearing a blue NFL shirt poses with an engaged expression.

Finley was a great sport during his recent trip to the gastroenterologist. (Photo by Jay Sandstrom)

Even though he may not be listening directly during those appointments, it’s clear that he understands more about why we’re visiting the doctor. I want him to have that understanding, as education and knowledge about his condition are going to benefit him in the long run. Our doctor made sure to say “that’s good!” during the exam when talking about what she sees and feels so Finley can understand.

He also fully understands, unfortunately, that lab work goes along with a trip to the hospital. We normally try to get that done ahead of our GI appointments, but that didn’t line up this time. Understandably, he’s scared of getting poked. I have to restrain him and help the lab technicians do their jobs safely. I’m sure this section of our appointments will be a battle for some time to come.

I’m happy that Finley is gathering more understanding about Alagille syndrome and how it affects him. His mother and I and his team have been working to plant those seeds, and it’s nice to see them start to bloom. He even pushes on the stomachs of his stuffed animals when playing with his vet kit, just like the pushes he undergoes at his doctor appointments. I hope that when it’s time for him to take the wheel regarding his treatment, we’ll have prepared him well.


Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.