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.

We've decided...

We had our ultrasound last Thursday. Kaiden was once again great, waiting almost an hour and a half with me. Once we got in the room, he squirmed a bit at first, but then settled down once we started reading some books. He let the lady do her thing and we were done in about 10 minutes.

We got the call from the dr on Sunday. There are 3 cysts that are about 2 cms in his ear area. So our choices are the same as before...injection then surgery, or vice versa. It's a tough decision. I got a lot of great advice from other moms on facebook, who've gone through similar things and the majority are saying to get the surgery done while he's still young. We can then do an injection on his ear area, if that isn't as successful as we hope, there is a possibility of a second surgery on his that area. I feel like we've prepared for this surgery mentally already, so why not just get it done now. The date is set for March 27th, and we have less than one month until that day.
I dread the thought of leaving my little boy on the operating table and having this done to him, but it's either now or later. I feel like the timing is just right for having this done now. I pray this is the right decision, and there are no complications to his precious smile!

Consultation

We had a consultation and follow up today. I was expecting the dr to simply say surgery is set and that's what the next step is. After a few pokes he said we can either prodceed with surgery, scheduled for March 27th or continue with injections. He will book an ultrasound next week to see if there are any cysts that are injectable now. The mass feels much softer to him, so he thinks some scar tissue may have healed, since the last schlerotherapy session was 6 months ago.
So...we wait...until we have the ultrasound, hopefully next week, and decide from there. I'm not sure what results I want from the ultrasound. I was preparing myself for the surgery, and am kind of dissapointed that is might be postponed another 6 months. I think about it almost everyday, and think if we do the surgery now, the rest of the treatment will be relatively minimal compared to that....I don't know....

...

"You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we were chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all-"Real Love".

No More Injections

We had an ultrasound appointment November 23rd, and the results showed only small cysts left. The largest two were about 2cm. The dr has advised that he believes we've done all we can with the injections up to this point. He believes the next best course of action is surgery. We have an appointment scheduled for February 16th just to discuss the risks, procedures, recovery time expected, etc, etc. Then we will proceed with surgery either the end of March or early April.
I guess I feel good knowing we may be coming to a close on "Kaiden's Journey," but I also realize realistically this is something we are going to have to manage for his whole life. The dr has advised he won't be able to remove everything, but will do as much as possible. I guess I am also happy we are doing this now, instead of at a time when he would remember it. They do say babies heal faster than adults, so that's a positive point too!
I know Kaiden will prove again how strong he is and he will make me even prouder of him. I love that little man so much!