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!

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!

Received the All-Clear

Zane received the all-clear from his doctor this morning. However, she wants us to call the surgeon if he gets even the slightest hint of a runny nose. We are very fortunate to have her; she seems as protective of Zane as we are.

Because I have been a massive ball of anxiety this week over the surgery, my mom decided she will fly into Durango and drive with Zane and me to Denver. That way, I will not be alone in my waiting and worrying.

Zane’s surgery is scheduled for 7:30 am at Rocky Mountain Children's Hospital. We have to be at the hospital at 6:00am for prep. Yikes, that’s early! The surgery can range from 3-4 hours. I know I won’t be eating breakfast on Monday morning J

Thanks for keeping Zane in your thoughts and prayers.

Let the Countdown Begin

We’re in countdown mode to Zane’s surgery (September 12^th). He and I will drive up to Denver on the 11^th and hopefully have a room at the Ronald McDonald House. They do not take reservations, so I have to call the day we leave to see if there is availability. The last few times we’ve been to the hospitals in Denver, we’ve had no luck getting in at either the downtown of Aurora locations L

Needless to say, I am filled with anxiety about the trip. The last time Zane had surgery, things did not go well. He coded, was reintubated, and spent a great deal of time recovering in the PICU. While the surgery itself is enough to make me nervous, the pain management issue brings with it a whole other set of anxieties. From all appearances, Zane has either an allergic reaction to or—minimally—a sensitivity to narcotics. Jeff and I always carry fears with us when it comes to Zane and illness or Zane and surgery. Things that seem like no big deal to most are huge to us. While Zane has been healthy, his diagnosis automatically carries with it the label of medical fragility. We take nothing for granted.   

I plan to spend the entire time with Zane in the hospital. Word has it there is only a reclining chair in the room unlike the pull-out bed at Children’s.  *sigh* But I absolutely refuse to leave him this time. So I am packing my Kindle and my comfy pillow.

Zane has an appointment with his pediatrician on Thursday to make sure he is healthy enough to undergo surgery on Monday. If she gives us the all-clear, and if he remains fever and cold-free throughout the weekend, kidney surgery will be a go. I will do my best to update everyone from Denver. I am not sure about internet access. But if technology becomes an issue, I will have Jeff post updates for me.

Please keep Zane in your thoughts and prayers in the upcoming week or two.

Surgery Date Is Scheduled

Zane is scheduled for kidney surgery on September 12^th at Children’s Hospital. He and I will make the drive, and I will stay with him in the hospital since he will be in-patient. Jeff and Justin will remain at home.

I tried to coordinate the surgery consultation for his ptosis for the same trip, but of course things could not be so easy. The only appointment they had was a week before his surgery date. There is no way I am paying for hotel rooms for additional week for a simple consultation (there are rarely rooms available at the two Ronald McDonald Houses in Denver when I call) . Zane’s eye appointments will have to wait until 2012.

Please keep thoughts for him as his surgery approaches.