Surgery success! Now the tough part...

We arrived at the hospital at about 5:45am yesterday. No small feat considering I wait up for the overnight nursing until midnight, and was up again at 4:30am. So 4 hours of sleep and a very small breakfast later we hit the road. Thankfully there isn't much traffic at 5:00am and we made it to the hospital in less than 45 minutes (typically it takes 1 to 2 hours in traffic for the 36km trek...).

Seiya was in good spirits and didn't sleep at all on the drive. In fact he looked excited to be back at Sick Kids, his home away from home. That is, until we got into the pre-surgery room, at which point he looked very confused.

After speaking with the anesthetist and then the surgeon - who is also Seiya's ENT doctor - about the procedure again, he was wheeled away. They did the T&A procedure as well as an audiology test. It took longer than expected so we feared complication. When the doctor saw us again he told us that Seiya's adenoids were far more swollen than originally thought, essentially growing up into the nasal cavity and very fibrous (hard).

One of the challenges with adenoid surgery is that the adenoids extend back to the spine, so obviously they need to avoid taking out so much of the adenoid that they get all the way back there and cause trauma/leave an opening, etc. The other challenge is that Trisomy 18 babies typically have compromised palettes to some degree, so that adds a layer of complication to the process. Along with that, Seiya having fibrous adenoids means that it's difficult to judge how much is safe to remove, as the adenoids are typically soft up front and get tougher as they get nearer the spine. This is a good indicator for the surgeon as to how near they are getting to the spine as the operation goes along normally, but with Seiya it was a lot more difficult to judge as all of the adenoid tissue was hardened.

We were told a good majority of the adenoids causing blockage in the airway were removed, and should know within a couple of weeks how well the procedure helped with his breathing. As we know, there are a lot of issues compromising Seiya's ability to breathe properly, not just this blockage, but the hope is that this will alleviate some of the issues he has and allow him to be less reliant on machine and medicinal support.

As usual for Seiya, as difficult and risky as surgery is for him, its the recovery period that we worry about most. Especially regarding the airway as the wounds from surgery bleed, and mucous and saliva build and can get into his lungs or block his airway. He has a tough time coughing and expelling obstructions normally, so having to do it after surgery on his tonsils and adenoids is that much more difficult. Not to mention every time the poor little guy does manage a cough, it causes him so much pain.

Pain management for this operation usually consists of opiates such as morphine and some form of ibuprofen, but those need to be balanced carefully due to his other underlying heart and pulmonary, lung and airway issues. So he hasn't had much beyond Tylenol to help, and he's had a few good cries that make me feel so sorry for him because there's really nothing you can do to make the pain more tolerable. Hang in their my little guy!

I'm currently with him in the observation room at the hospital watching him sleep and breathe with very little oxygen and an nasal pharyngeal tube (NPT) in his left nostril, and he's doing pretty well. Not great, but not awful either, and this is just a day after surgery. If it gets better than this in the next few weeks after healing I might have to drop the Darth Seiya moniker...

Either way it looks like we'll be here for another couple of days at least, waiting and hoping he recovers the way we want and that he doesn't catch anything in the hospital that would cause set backs. Mom and big brother are having a day together back at home. It's hard to be apart, and inconvenient to go back and forth, and so we wait, wait and wait some more...

As confused as he still seems though, Seiya has done amazingly well with this procedure and we hope hope hope that this lets him breathe easier and grow even stronger!

Dad