The latest obstacles we faced in getting my son’s blood drawn
A recent trip to the lab involved unexpected complications
After my wife, Dani, and I entered the world of Alagille syndrome and became advocates, we aimed to provide a view of everyday life with the condition.
When our son Finley was diagnosed at 4 months of age, we wanted to hear about average moments with Alagille, not just medical information. So we now strive to show the good and the bad, the normal and the mundane, and all of the challenges and worries that accompany a rare disease.
It’s more enjoyable to focus on the positives, but today I want to focus on a recent frustration we experienced: getting Finley’s blood drawn.
Finley, right, and his brother, Jackson, wait for Finley’s labs to be drawn. (Photo by Jay Sandstrom)
Finley had an upcoming appointment with his gastrointestinal (GI) specialist. Luckily for us, we’ve started seeing the doctor twice a year instead of quarterly, so the burden of visits has lessened. We always try to get his labs done before each appointment.
We learned early on in our journey that while it saves a trip to get Finley’s blood drawn on the same day as his GI appointment, it doesn’t allow us to review the results with the doctor. As any rare disease caregiver can attest, lab results can be scary and confusing. Having the opportunity to hear the details in person, instead of reading them online via MyChart, is well worth the extra trip to the hospital. It’s frequently calmed our nerves regarding test results.
Our family had been pretty good about getting Finley’s blood drawn in advance of his appointments, but this late-July GI visit snuck up on us. It’s been a busy and fun summer, and an extra trip to the hospital wasn’t at the forefront of our minds. That resulted in us making the trip for lab work on the Saturday before Finley’s Tuesday appointment.
Our doctor had put in a standing order, allowing us to visit the lab at our convenience. Or so we thought.
Complications arise
When we arrived, I checked in and brought our info to the lab desk. The tech informed us that they didn’t have an order for Finley. While we could tell them what tests he’d had done the last time, they couldn’t see what had been ordered. Immediately, anxiety set in.
We waited as the lab tech tried contacting someone from the GI department. Keep in mind this was a Saturday, so the process was harder than it would’ve been on a weekday. Both of our boys were there, and they grew restless the longer we waited. Thank goodness for coloring pages and a fish tank that kept them somewhat occupied.
Finley keeps busy coloring while we wait. (Photo by Jay Sandstrom)
Thirty minutes passed. Forty-five minutes. One hour. All we could do was sit, feeling helpless and frustrated. Then the lab tech gave us the nurse line phone number, so Dani called and explained what we needed. Once this call went through, someone finally contacted the lab tech by phone to submit the orders.
The lab tech who helped us that day was fantastic. It wasn’t her fault that the required tests weren’t in the system or that it took time to get someone on the phone. She was kind, supportive, and apologetic as we finally walked back to do what is normally the worst part of labs: holding Finley while he gets poked with the needle.
What should’ve been a short trip had turned into a long one. Ultimately, it doesn’t matter how the mix-up happened. I’m not looking to place blame. It’s simply an example of how difficult navigating rare disease care can be. You think you have everything lined up, then all of a sudden the lab doesn’t have the order, or you’ve called too early to schedule an appointment.
It’s incredibly frustrating to deal with as a caregiver, but what’s even more frustrating is knowing that Finley will have to navigate all of this process when he’s older. We have amazing doctors who care about him and how he’s doing, but the healthcare system can make my blood boil at times.
Our solution was to explain this issue to our doctor, who ensured that Finley’s lab orders will remain on file for five years. I was so happy to hear that, as it should prevent our recent problem from happening again.
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.
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