We’d like to thank everyone who has prayed for Callie and our family as we’ve dealt with her back pain. We were referred to a palliative care clinic at Brenner Children’s Hospital that deals with medically fragile children. Managing pain is one of their specialties, so we’ve been trying several combinations of medicines to try to find a magic solution.
A new, much bigger concern we have is that Callie needs dental surgery. For many people, this would be a basic, outpatient procedure. But with Callie’s high aspiration risk and her inability to protect her airway, this procedure will require general anesthesia, and she’ll have to be admitted to Duke Hospital.
This presents a few challenges for us. First of all, Callie has major anxiety related to anything medical. She loves her pulmonologist, Dr. Kravitz, yet still cries and begs to go home constantly when she has appointments. Another challenge is the fact that when she’s taken off the breathing machine after surgery, she’s likely to need her Bi-pap machine – which she hates. So we’re working with her now to try to get her to tolerate it.
We saw Dr. Kravitz last Friday, and as always, he’s already planning. As soon as he heard from the dentist that Callie needed dental work, he contacted one of the pediatric anesthesiologists and a doctor who leads the pediatric intensive care unit (PICU). Dr. Kravitz likes to plan for every worst-case scenario, then hope for the very best. Having him around makes us feel a lot more secure. He says that hopefully, she’ll wake up in recovery, need her Bi-pap minimally, or not at all, and be out of the hospital in 24 to 48 hours.
The procedure is scheduled near the end of August. For the past few weeks, and likely for a number more, we’ve felt overwhelmed, stressed and worried. We’ve seen some things worsen quickly, such as not being able to ride in a car seat more than 15 to 30 minutes without having to be repositioned due to pain and discomfort. Some things we can’t really pinpoint.
On a positive note, we had a wonderful trip to the beach a couple weeks ago. Callie loved sitting in the water, looking for sea shells and playing in the pool. It was nice to have such a good respite before the chaos of school begins.