Below is an edited version of a letter I sent out to friends and family tonight concerning our visit to Texas Children’s Hospital in Houston.
Hello friends and family. Andres had his appointment at Texas Children’s Hospital this morning, and we are now home safely. The appointment went very well. Andres saw Dr. Mered Parnes, a Fellow at TCH. Dr. Parnes treated Andres and us with the utmost respect and dignity. I want to spend some time explaining the professionalism and courtesy and kindness Dr. Parnes displayed, but the hour is late and I need to update y’all on the appointment. My heart is full with many blessings from our trip to Houston, and I hope I will have a chance to blog all of it.
The first thing he told Andres was that there were no needles in that room and nothing would happen in that room that would hurt. Andres is such a trusting and forgiving soul, that wasn’t necessary; but it was wonderful to see such tenderness and sensitivity in a place where chronically ill children spend so much of their time. During the neurologic exam, Dr. Parnes repeatedly told Andres, “Good job,” and “You’re doing great.” It was more than obvious that we were in a top notch medical facility. More than that, though, we were in a place where the doctors love children and are passionate about practicing and refining the art of medicine. Thank you, Blue Bird Clinic for Pediatric Neurology at Texas Children’s Hospital.
Dr. Parnes spent about an hour and a half asking Andres and us questions about his symptoms and medical history, giving him a very thorough neurological exam, and reviewing the MRI. Well, he not only asked the questions, but he listened to the answers as well. 🙂 He then had the clinic director, Dr. Zeller, review the MRI, and he also had Dr. Zeller examine Andres’ eyes, whereupon they agreed that Andres’ optic discs have blurry margins, but that was the only positive neurologic finding. Dr. Zeller was more than kind, and joked around with all of us. There are a couple explanations for the condition of the discs, one of them being a sign of increased intracrainial pressure which would be a complication of the Chiari. If the blurry margins of the discs can be explained by something else, it could be completely harmless. They do agree that Andres has a very impressive Chiari 1 malformation, but they seem to feel that his anatomy is compensatory for the defect and that his cerebrospinal fluid flow is not being impeded. In other words, the way God put Andres together means that he can have this incredible defect and everything is still able to work the way it is supposed to. We will be taking Andres to a pediatric ophthalmologist to determine the origin of the blurry discs. I am praying they can see us before Andres’ May appointment in Austin, so the neurologist will have that information to add to the pot.
The doctors do not think Andres’ headaches are caused by the Chiari. They suspect that the Chiari is completely coincidental and asymptomatic. They do not feel that anything needs to be done at this point. They think the headaches are migraine in nature and will either grow into worse migraines or they will go away.
This is good news because:
1. This gives us hope that Andres will not need brain surgery now and possibly not ever.
2. It appears that Andres has not suffered any neurological damage.
Because we need for Andres to have care locally, we will not be following up at Texas Children’s Hospital unless something unexpected happens. We will keep our appointment at Dell’s Children Hospital Neurology in May for a “second” opinion, and at that point we will agree on a follow-up plan, perhaps annual neurological exams to ensure the Chiari is not progressing and that Andres remains asymptomatic.
Please continue to pray for total healing for Andres. I would like nothing more than for this young doctor to have one of his first patients post med-school to be miraculously healed. I will be happy to deliver the confirmation MRI in person.
Thank you for loving us and loving Andres, and please keep on praying.