I’ve gotten so many messages about Gannon, it’s much easier to do a post on the blog than to update everyone individually.

So I left you off on Monday evening. Gannon had a terrible time breathing in PACU right after his surgery – from the sounds of it his airway was almost completely closed. The respiratory therapist who saw him in surgery, then saw him when he wasn’t doing well later on Tuesday told me he wasn’t getting hardly any air in his lungs because of the swelling in his airway. When I went back there they had the crash cart and several nurses still working on Gannon 2.5 hours after his surgery ended. He looked like crap. I’ve seen a lot of sick kiddos struggling to breathe but this was scary.

They wanted to send him straight to ICU but there were no beds so finally at around 3:30 we got upstairs to floor 10 and he started looking even worse. When kids’ upper airway swells shut, they get a medication called racemic epinephrine as a breathing treatment. This works great but kids “rebound” after the dose and get even worse swelling all of a sudden several hours afterwards. 4 PM brought both upper AND lower airway problems as he started wheezing and getting fluid in his lungs. He got several more breathing treatments but just in general, he was working so hard to breathe.

By 4 am the nurses were ready to call a rapid response on him. He was breathing around 60-70 per minute, the crash cart came back outside his door, the medications didn’t seem to be making a difference anymore. He had so much stridor and wheezing and barking – like the worst croup ever. He would heave and gasp with each breath as he was sleeping. They started the process of getting him into PICU but again, there weren’t any beds.

By 8 am he was getting continuous racemic epinephrine nebulizers to keep his airway open alternated with albuterol treatments. He spiked a fever too. Thank goodness Gannon was totally out of it but when he did wake up, I asked him if he was thumbs up or thumbs down and every time that little thumb of his went down my heart just broke. I could tell by the way the nurses and doctors were talking, they were nervous too.

By the time 11 am rolled around we finally got a bed in PICU and he was doing better until he fell asleep again and couldn’t keep his oxygen up. He was put on oxygen (which he hated of course) and after a nap, we are still trying to get him to take his first drink. He hadn’t successfully swallowed anything in almost 36 hours at this point.

He finally was brave enough to try apple juice and it immediately came out his nose. He screamed and cried and refused to try anything again the rest of the night (understandably so). His breathing improved with the oxygen and steroids. We are thankfully free of racemic epi now since 11 am on Tuesday.

But why the heck is any liquid or water coming out of his nose? ENT said unfortunately this is a complication of adenoid surgery. Gannon’s adenoids were so big that they essentially left giant holes in the roof of his mouth. He will have to learn how to swallow again but he’s so terrified of drinking ANYTHING now. She said she’s only seen this in one other kid and it eventually did get better. We are working with speech and occupational therapy now to try and help him out.

About 3 pm today we finally got back to our favorite 10th floor. We’ve got much more freedom here and can ride in the car around the unit without all the cords and wires. I know most of his nurses as they’ve either cared for Gannon or Anders in the past 2 months. He’s oxygen free now. His breathing is much improved but when he falls asleep all of the drool and spit pool in his mouth so he wakes up very uncomfortable.

During surgery they also had an interesting find…when they went to intubate him, they inflated air in his lungs and bubbles came up through his esophagus. Once again, Gannon had everyone puzzled. There’s a possibility that Gannon has a hole between his trachea and his esophagus (a fistula) that will need to be surgically repaired which sounds AWFUL because he did so so terribly with this recovery. Gannon is every anesthesiologists nightmare.

This is the exact thing that happened to Gannon when he had his abdominal surgery when he was one and when he had his procedure in Milwaukee only it was much much worse this time. We were hoping maybe that’s something he had grown out of at this point, maybe removing the tonsils and adenoids will help with future procedures but I think surgery in general for Gannon will be off limits unless absolutely necessary….except if it is a fistula that needs to be repaired, that will be an absolutely necessary surgery 🙁

So for now, we are chilling on floor 10, at least for another night as we beg and plead and bribe him to try and drink or eat SOMETHING. It’s so hard seeing him like this. His voice is almost completely gone today. He just cries and asks if we can go home. We’re all a little miserable here but at least he can breathe.

That’s the update for now. Thanks for checking back in.

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