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We’re back from Denver…for a short time. We are back to unpack, do laundry, then repack for a camping trip.

Denver was not a whole lot of fun this time around. Aside from spending most of our time at The Children’s Hospital, it rained. So Justin was quite bored by the whole experience. He and Jeff had planned to go to Dinosaur Ridge where dinosaurs such as Apatosaurus, Stegosaurus, and Allosaurus (Justin’s favorite) were first discovered. Trails allow visitors to explore dinosaur tracks and fossils. Instead, Justin watched Sponge Bob at the hotel room. Not great fun.

Zane did well under sedation. They had him anesthetized for four hours to perform a DMSA (renal) scan, ear wax removal, an ABR, and a dental cleaning. As a precaution, the anesthesiologist decided to admit Zane overnight to keep tabs on his oxygen saturation due to the not-so-pleasant coding experience last time he went under. All went well. There were no desatting episodes overnight.

As far as the results of his procedures: Zane will likely need to try out some hearing aids, as the audiologist determined Zane has mild hearing loss in both ears. We don’t know if Zane will keep the hearing aids in, so we are able to try them out for 30 days before making a purchase. But in order for this to happen, Zane needs molds of his ears made, and then needs to have a fitting. Afterward, he requires a one-month follow up. If things work out at that time, he can order his own set of hearing aids.

Aside from his ears, Zane needs to have urologic surgery sometime this summer. His urologist wants him to have one more VCUG here in town before the doctor comes to Durango in July for a series of clinics. At that time, he will see Zane again and determine the extent of his surgery. We were hoping to have it done in conjunction with eye surgery, but life does not always go as planned.

The morning Zane was discharged, we had a surgery consultation at the Rocky Mountain Lions Eye Institute to talk about Zane’s ptosis. Unfortunately, Zane was less than happy from 7:00am that morning all through the appointment. He wailed so much, he would not even open his eyes for a consultation, which is a critical component in determining the extent of Zane’s eye surgery. So we will need to come back for a consult again sometime. I am not sure how all this will be coordinated since we live some 350 miles away from the hospital. Apparently—aside from the much-needed eye consultation—Zane will need to have the surgery with a follow-up one week later, then an additional follow up a month later. At this point, I cannot wrap my mind around all that needs to be coordinated.

Fortunately, Zane’s dental issues (gum loss on the bottom) can be followed here in town since there is a pediatric dentist here in Durango. Yay for that!

Time to pack for Ridgway and Ouray. Again, thank you to everyone who called, texted, and checked on Zane this past week.

To Sedate or Not to Sedate

Seemingly easy decisions for most parents often prove difficult with a child who has a different chromosomal karotype—like Zane. At the moment, we are trying to coordinate appointments at The Children’s Hospital in Denver. Since the drive takes a day with kids, we work to fit in as many clinics as possible in a short time.

One of the appointments I am supposed to arrange is an ABR (auditory brainstem response) to test Zane’s hearing. He already has failed three hearing screenings. The next step to indicating where his hearing loss lies is with this ABR. However, the test requires that Zane be sedated. There are risks to anyone under sedation; more so to Zane. The last time Zane was anesthetized (in 2007) he coded twice, his oxygen saturation level dropped as low as 26, and he spent quite a few days in the PICU on a ventilator. This may have been the result of anesthesia; it may have been caused by the administration of morphine on the part of the nursing staff after being advised by me not to give him the drug. Whatever the cause, our son almost died.

While I understand the importance of hearing, I don’t know if it is worth risking Zane’s life. Sure, things may turn out just fine during and after sedation with an ABR. They also may not. The extra 18th chromosome that is present in presumably every cell of his body is unpredictable. His response to sedation may be different than most of ours given this extra genetic material.

We know Zane can hear. He responds to voices, music, and noises. What we don’t know is what pitches, what tones, he cannot perceive through his sense of hearing. But he is a happy child. He doesn’t seem frustrated by whatever absence of hearing he has. His pediatrician really wants him to have the test. I don’t. My instinct tells me it is the wrong thing to do. I’d rather continue to have my happy son who may or may not have significant hearing loss than risk putting him in harm’s way needlessly.