Long Day

Today was Ben's CT. It was a very long day, and honestly harder on him than it was on me.

Overnight we delayed all his feeds for 20-30 minutes so that his last feed would be around 6am. We also decided to push all the feeds via the NG tube to allow him to rest in preparation for the long day ahead of him.

At 8 am we were told that we may get to have the CT done early so to start getting Ben ready around 9:30. I dressed him in his Jonny shirt and started the NG pump with clear fluids he was allowed.

10am and nothing...we were still waiting.

11:30 Ashley called to let me know how he and Harrison were doing. I cut the call short since someone was at the door.

The resident for pediatrics was at the door with the nurse whom was less than amused. I couldn't quite grasp why she was here. She explained that (not unlike yesterday) there had been a "misunderstanding" between departments. The person booking the CT was under the impression that Ben would be allowed to be sedated and remain on his front, the radiologist however wanted Ben on his back meaning he would need to be sedated with a breathing tube, Dr. Hong wanted the CT done on his front with no sedation. Since there were not 1, not 2 but 3 different scenarios the resident wasn't sure what the actual plan was going to be. She was going to page Dr. Hong and reassess the situation in 45 minutes to an hour.

I spent the next 78 minutes calling Ashley and generally fuming over the situation. Poor Ben was originally here to gain weight. He had to this point spent over 6 hours with no food and no plan to resume feeds until someone could figure out what the heck was going to happen. Not exactly easy for him to put on weight when he can't take a feed. I mean with an anesthetic clearly he can't eat before hand but I thought all these little details (like IF he was going to be given an anaesthetic or not) should have been worked out in advance of his fast.

At shortly past one Ben's nurse returned to explain we could resume feeds and that the CT people were going to "try" the CT unsedated and with Ben on his front.

After half of a feed, we were called to the CT. Ben was swaddled and placed on his tummy in the CT machine, the little protective blanket wrapped around him so only his little head was visible. Normally parents aren't allowed in but somehow I talked my way in, and was given a very attractive protective apron. I stood on once side of the scanner, his nurse on the other. I wanted to stay close so he would know I was there and didn't leave him.

Ben was a super star. He only moved once during the whole scan and from what the techs said, they were pleased with the images.

Now the waiting game started to find out if Ben was a surgical candidate.

At 1522 Dr. Hong walked in. A small surgical instrument pack in his hand. He told me he reviewed the scan and that there was in fact enough bone mass in Ben's jaw to have the surgery!!! He showed me the device he and Dr. Belozy would be using in Ben's jaw. He also said that tomorrow he would assess Ben's upper airway in the ENT clinic and if that was okay, then the instruments would be ordered and the surgeons would start looking for some OR time over the next two to three weeks. Once a date is booked a multidisciplinary meeting will be held with Ashley and I to discuss the benefits and risks of the surgery in more detail.


This day may have been long, and frustrating, however it ended on the highest of high notes. Ben is a surgical candidate. In a few short weeks he will be able to breathe easily. At the moment it doesn't seem possible...I just hope I'm not dreaming.