Revision Supraglottoplasty Attempt: Houston, We Have a Problem

Preparing for Nolan's surgery was complicated, but we were extremely blessed to have friends who offered to take care of Matthew while we were at Buffalo Children's. I booked a dog kennel stay for Casey. We had all of our ducks in a row, and were awake at 3:30 am for the trip to Buffalo.

We checked in at 6:00 am, and headed up to the 9th floor. Nolan was exhausted from the lack of sleep and was also feeling the effects of not having his overnight feed. He sat in a chair next to Dennis and didn't do much of anything until our name was called.

Our name was called and Nolan had his pre-op physical. His temperature, blood pressure and lungs sounded fine. He was weighed and measured, and we were sent to a different waiting room to wait for the same-day surgery nurse who would take his history. Nolan was very excited to find the new waiting room had a wii gaming console.

The same-day surgery nurse called me into another room to take Nolan's history. Since Nolan's more recent surgeries have been done in Rochester, those records weren't in their system. When she opened his file, she noted that none of his records were in his system. Apparently, Buffalo Children's didn't start putting records into a computer file until very, very recently. I went over as much of his history as I could remember, and the nurse had to leave to ask a fellow nurse how to spell "gastroparesis." She then took a look at Nolan and remarked on how healthy he was and how it was hard to believe he had so much medical history since he didn't look like he had growth problems and he looked so "normal."

I started thinking of her as Nurse Helpful. Nurse Helpful was quite convinced that there is nothing wrong with Nolan (he is of normal size and weight now, and has no growth issues due to the tube feeding).

In any case, the Amazing Health and Vitality of Nolan will come into play later in this saga.

We were taken downstairs to the 2nd floor, and our ENT and the anesthesiologist came in to see Nolan. Everyone listened to his lungs and heart and we discussed how he would be a direct admit to the PICU. He would be on a ventilator and intubated until Thursday. His records were taken to the OR and the nurse took him from our arms and walked him down the hall. He screamed and reached out for us the entire way. "MOMMY, MOMMY!!!!"

Having gone through this something like 12 times in the past, it never gets easier. Never.

The surgery should take about an hour, so Dennis and I went to get some coffee and something to eat. We feel a bit like seasoned pros at this, and know that the next meal may be a long time coming. We ate, and about 20 minutes later, we went back to the OR waiting room.

This is when we ran into Nolan's ENT.

"Oh, there you are," she said.

"Wow. That was really fast!" we said.

"It was fast because I can't do the surgery."

Houston, we have a problem.

She took us into a conference room and we learned that Nolan has a massive infection throughout his entire airway. I'm not talking about a minor upper respiratory infection. I'm talking about huge amounts of pus from his sinuses all the way down into his lungs. She showed us pictures and a video of his airway.

Remember Nurse Helpful? At this point I wanted to take those pictures and video and show them to her. How healthy does this look, lady?

He had no symptoms of a raging infection. None. He still doesn't have any symptoms of a severe infection. He has no fever, is playing, and is eating "normally" (normally for Nolan, anyway - certainly not normal for a typical child of his age).

Since they couldn't do the surgery, Nolan would be released and we will try again on April 9. I went to the recovery area to see my little boy, who had to go through the trauma of separation, general anesthesia, and IV placement... for nothing.

I am deeply grateful to his ENT doctor for taking the care to scope his airway before doing the surgery, because cutting into his airway and then intubating him with this sort of infection would cause significant danger to him. She is very cautious with airway surgeries in any case, and with Nolan's level of infection there is no way we could do any sort of surgery.

She cultured the infectious "debris" in his airway and we should have the results in a few days. Surgery has been rescheduled for April 9.

In the meantime, he has been placed on Augmentin for 21 days. His "post-op" appointment on March 18 will become his "pre-op" appointment. He'll be placed on another round of antibiotics at that time. Basically, Nolan will be on non-stop antibiotic therapy until his surgery date.

She also ordered a compound of Flonase with Bactroban - this is a nasal solution and we are supposed to rinse his sinuses with it to kill whatever bacteria is lurking there.

We left the hospital and went home. We played "run around the town to find a pharmacy with Augmentin," which is its own blog post. We picked up Matt and the dog from the dog kennel. The dog kennel owner was fantastic and didn't charge us for Casey's overnight stay (if anyone wants a recommendation for a good dog kennel in the Southern Tier/Jamestown area - give me a shout. Sadie Creek is excellent and the owner was amazing throughout our crazy surgery day). I booked Casey into the kennel for April 8, when we get to try this again.

Nolan is home from school today, and I am having extra cups of coffee. He still doesn't appear sick, despite the raging infection we know is in his airway. I'm interested to see what the culture shows.