Surgery was successful!

Surgery was on Tuesday. It was scheduled for 4 hours, and actually lasted a total of 9 hours! We were the first ones in the operating room waiting area and the last ones! What a long day, but looking back now that was the easy part! The dr had managed to remove 90% of the cysts, found all the nerves and checked them all afterwards too. He was very pleased as we spoke afterwards.
Kaiden was admitted to the PICU at McMaster since the surgery was much longer than anticipated. He stayed overnight there, and we just went back to the hotel since we weren't allowed to stay. The hardest part of that day was seeing my poor baby with tubes coming out everywhere and very swollen.

The next day was the worst day of my life. He was extubated in the morning, and we just cuddled him all day long. He would wake up, scream and flail around in your arms, then settle back down. It was heartbreaking seeing him in so much pain and not being able to do anything about it. I had serious regrets about agreeing to do the surgery at this point. I was just heartbroken, stressed, worried and completely overwhelmed with guilt.

We were discharged from PICU later that day and sent to the pediatric ward. I stayed overnight with him the first night and I was terrified about how he would sleep. But he feel alseep in my arms and I put him in his crib around 8pm and he slept until 11pm. He woke up, pulled out his IV and had soaked through his diaper. Once cleaned up, he was back to bed until 3:30 am. Then he woke up and was so alert!! We watched a movie and he was back to bed at 5:00am until 7:00am. 

The next day was a complete 180! He was eating, drinking, got off the morphine and got his IV out. We even went to the play room and he played around for about an hour. Still slept a lot, but his spirits were definitely better! WHAT A RELIEF!! Mike stayed that night and he only woke up once at 11:00pm, watched a movie with Mike and then slept the rest of the night.
Friday, was about the same. He didn't sleep good in the morning, so had a three hour nap after lunch. Then we wandered the halls with him, and he enjoyed just walking around, exploring the hospital. I stayed this night, and he went to sleep around 8pm, and the nurse came in 10 minutes later to get his vitals! So he woke up and didn't go back to sleep until about 10pm. But he slept all night until 7:00am.

Saturday, we saw the dr that did the surgery and he was pleased with Kaiden's results. He is swollen and it will take time to go down. The drain will stay in until Tuesday, when we follow-up with him. We were discharged about an hour later, and made our way home!
We had noticed his tongue is a little different. He was having a hard time eating in the beginning. He ate a lot slower than he used to, and packed food into the swollen cheek. He seemed to be drooling a lot more from that side too. But the dr said his nerves could be sleepy and could wake up over time. He is talking normally, and seems to be getting better with eating. So we'll wait and see on that.

Once home, we all had a nap after lunch for 3 hours! I can't wait to sleep in my own bed tonight! Kaiden got used to falling asleep in our arms over the past few days, and had a hard time getting to bed. He seemed freaked out with the bath, and almost seems like he doesn't trust us, once we start doing something. He's been poked and proded so much over the last week, it seems like he is expecting the worst. The nurse is coming tomorrow to change the dressing on the drain again. He's going to be suspicious the minute she walks in the door! I just want some normalcy back in his life again! Poor kiddo, I can't believe how intense this how process was. Again, Kaiden has amazed me with how strong he is. He is a fighter and an unbelievable little boy. Hopefully, will be quite the success story...

Kaiden made the local newspaper

There was an article published about Kaiden in the local paper. We're hoping to raise awareness for his condition and the Travelling Awareness Bears....have a read!


TheRecord - Kitchener toddler being treated for birth defect

Surgery day is looming...

It's Sunday...surgery is on Tuesday. To make things a little more stressful, Kaiden has a runny nose and has been sneezing a lot the last two days. When I dropped him off at daycare on Monday, one of the babysitters was sick. My gut reaction was to just take him right home, but I left him for the day. I feel bad taking more time off work since I'll be gone for 2 weeks so soon. But looking back now, I need to realize to trust those gut feelings. He probably got this cold from her. I'm praying he will be rid of this tomorrow, so surgery goes on as scheduled. We've come so close, and to have it postponed would be heartbreaking. The countdown is driving me crazy, it's coming so fast, yet I've been dreading it for so long! I just want it over with, and my little man on the mend.