Today was an informative, but exhausting, day in Pittsburgh for the “travel team,” as Auntie Mia called them in our latest email exchange 🙂 They’re a rockstar team as far as I’m concerned!
I spoke with Jenna for a while earlier this evening, and they spent about three and half hours with Dr. Escolar and her team this morning, during which Bryce was evaluated. Much of their discussion centered on proper care and interventions; they were given a list of equipment they will likely need in the coming months. She noted that they’re going through a particularly tough period with Bryce, especially since they don’t have the proper dosages for his pain meds figured out quite yet.
Dr. Escolar also recommended that they switch to a different kind of G-tube button that will allow them to feed Bryce more effectively. At the same time they do that, they will like have two additional procedures:
- Nissen Fundoplication: This is a procedure that prevents gastroesophageal reflux (GERD), which is a common in children with Krabbe. By creating an improved valve mechanism at the bottom of the esophagus, it can prevent acid reflux, which can cause a lot of discomfort and some pain.
- Tightening Bryce’s “floppy” epiglottis: Since he was really tiny, Bryce has always been a bit of a noisy breather (I said from very early on that he sounds like the zebras at the beginning of the Lion King movie 🙂 This, it turns out, is a result of laryngomalacia — aka floppy epiglottis. According to Dr. Escolar, this is causing Bryce to expend a lot of energy on simply breathing, and if they can tighten this up, he should be able to breathe easier.
His nerve conduction test was this afternoon, and while the physician’s assistant said it shouldn’t be painful, our little Bryce cried the entire time. Which of course is no fun for anyone. They should know the results of this tomorrow.
TOMORROW: Three more tests, including the one that will determine if what he’s seeing and hearing is matching up with what his brain is telling him. The spinal tap and MRI are happening in the late morning, and thankfully, Bryce will get general anesthesia for those. They fly home late tomorrow afternoon.
Please keeping sending love, strength and prayers to all of them. We’re hoping they can all get some rest once they get home.