Surgery Rescheduled

It was a good thing we canceled the surgery because Zane wound up with a cold. He had some chest congestion, which likely would have been cause for anesthesiology to turn him away in Denver. Two weeks prior to surgery, the urology office had Zane stop his elderberry syrup because it is a potential blood thinner. Justin, who kept taking his doses, stayed well; Zane got sick. Needless to say, Zane is back on the elderberry. We went full-force with nebulizer treatments of Albuterol and Pulmicort (five total per day), but have tapered it down to only two per day now. Much of that is due to the fact that Zane had an allergic reaction (we think) to the generic Pulmicort. He broke out in hives around his mouth. But, he is definitely on the mend and back to school.

Surgery has been rescheduled for October 10^th.

Thank you to everyone who offered encouraging and supportive words. They mean so very much. More than you realize!

Retarded

Last week I had a discussion with Justin. He and I talked about the word "retarded", what it means, and how some people may use it as a way to demean Zane. Immediately, Justin told me he hated the word. He also told me--in a reprimanding voice--that Zane is not retarded. Of course, I fully agreed with him.

With that said, this video made me think of Justin and how he has been forced into the role of defending and being the voice for his younger brother due to the cruelty, insensitivity, and ignorance of other people.

Thank you to my friend, Sandy, for sharing this on Facebook.

Surgery Canceled

All the arrangements, all the anxiety, all the preparation, and surgery has been canceled.

On Saturday night, Zane began to exhibit sick-like behavior: crankiness, sleepiness, sneezing, and nasal congestion. We put him to bed early and decided to wait until morning to see how he was.

Yesterday morning—the planned day to head to Denver—arrived. Zane still had signs of a cold coming on. I called the surgeon’s answering service and talked with the surgeon on call. He sounded a bit cranky himself at 7:30 in the morning. He told me in a clipped tone that nasal congestion is not a reason to cancel surgery…until I mentioned that Zane has both a Trisomy 18 and asthma diagnosis. Then he paused. Still, he said he and Zane’s surgeon could not make the final call. It would be up to the anesthesiologist. I didn’t have that phone number. So my mom, Zane, and I headed out, knowing we could be turned away for surgery in the morning. We stopped to have breakfast in town.

However, Zane fell asleep at the restaurant table—not a typical behavior for him at all. Normally, he is loud and happy and disruptive in restaurants. When I lifted his head, green snot dribbled from his nose. I called Zane’s amazing pediatrician—who did not have a clipped tone on Sunday morning. Did I mention she is amazing? After discussing the specifics, she believed that with Zane’s asthma he would be turned away in the morning. We canceled the surgery. I undid the numerous things I did to make the trip a go: canceled room reservations, contacted my employer about the vacation hours I didn’t need to use, ordered the antibiotic I thought Zane would not longer have to take, unpacked, and tried to shift my frame of mind out of surgery mode and back into daily routine/sick child mode.

I am exhausted.

At this point, I am not sure what will happen with Zane’s kidney surgery. I am waiting to hear from the surgeon today. Jeff and I both agree it is now best to wait for spring. Neither of us wants to drive over the passes with snow on the horizon. Zane could have surgery in October, but that would put his six-week follow-up appointment in November. Right now it is moment to moment, wait to see.

As for my mom, she is now taking a Colorado vacationJ

Thanks again for the prayers and support you have given to Zane and to us. It means everything!