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...
This is already a success story! Well done Jodie & Mike & Kaiden! To read about the feelings you guys are going through is heart breaking. You have made the right decision, the best decision with Kaiden being the #1 priority. Don't ever doubt that you've done something wrong. You are doing the best that you can. You guys are the best parents Kaiden could have! He is so very special.
ReplyDeleteI'd also like to give you a small piece of advice, try not to feel guilty for taking so much time off work. It's obvious that family comes first for you and that's a good thing. Work can always get someone to take over your tasks, but your family can't. Your family depends on you. And it seems like your work is pretty understanding with what is happening in your life anyways. I'm pretty sure they don't look down at you at all. They are probably inspired by you, how strong you are, how determined you are, how you are such an amazing mother. Not everyone's values are the same, but having family be your number one value in life is an inspiration and more people should value family the way you do.
I'll send my positive thoughts to you and the family, for a quick recovery!