More treatments coming up...

The dr confirmed our suspicions, and agreed that Kaiden's ear and cheek seem more swollen than last time he saw him. We have an ultrasound scheduled for Christmas Eve at 9:00am. Good side of that is that both Mike and I are off work, and it's early, so we shouldn't be there all day long. We should still be able to salvage Christmas Eve after the appointment. We will also spoil him rotten the next day!

Hopefully, we will have another schlero (injection) appointment scheduled for the beginning of January. If they aren't able to fit us in then, we will have to wait until after the new baby comes. Probably March or April. The dr agreed we should get it done now, as we always wait awhile after each injection to do anything else.

I originally thought the timing was horrible. But if we can get this injection appointment done before the baby comes, then Kaiden will hopefully still have some time to recover from it before becoming a big brother and dealing with that big change too. I'm not worried about the physical recovery, as he always bounced back quickly after being sedated. He just needs a good sleep and a good meal, and he's back. I'm more worried about his emotional state afterwards. He was so untrusting of us after the surgery, that I hope this appointment doesn't bring back those memories or emotions. I guess only time will tell...

It's been awhile...

It's been awhile since I've wrote on this blog. I guess life just gets busy, and I get more forgetful.

We've only had followup appointments since Kaiden's big surgery in March. He's been looking great! We've been so blessed that the surgery went so well. It did take a long time to get over the guilt of putting our baby through that. But now that we see the real results, we realize we did make the right decision.

Just when we start to almost forget about what this kid has been through, something pops up. It will be a lifetime roller coaster ride of happiness, then worry. Unfortunately right now, there seems to be a little bit of swelling infront of his ear. Two hard lumps seem to have popped up from nowhere. We do have another followup appointment on Tuesday, which is great timing, so I will bring it up to the attention of our doctor. It just sucks...just kind of a wait and see thing.

Also, the timing couldn't really get any worse! We have another baby on the way, due January 29th and it's coming quickly. If we need to book ultrasounds or an injection appointment, they may just have to wait until after the arrival of this new little one. I know worrying and stressing out about it isn't good for me, but how do you not! I once again wish I could just take this all away from him. But I have to try and stay positive, and pray the swelling will reside on it's own. This is the first time we have had random swelling without reason, since surgery. He did have some swelling when he had a double ear and throat infection, but it resided once the infection was over. Now, he seems healthy, so not sure what is causing this all of a sudden. It makes me realize this really is a lifetime journey for this boy, and us.

The roller coaster ride continues...

Our appointment was moved up from September to June. It's coming up on Tuesday. My original thought about it being moved up was, of course, worried. I thought maybe the doctor wanted to move it up because he was concerned the cysts were growing back. Now, I'm actually glad it was moved up.
Our usual doctor has taken a medical leave, and we are meeting with another dr. We've met him in the past, for a second opinion, and he also helped on Kaiden's surgery. I'm glad this appointment is coming up quickly because we've been through quite a bit lately.
Kaiden had an ear and throat infection a couple weeks ago, and it laid him out for 4 days. The poor boy just slept on the couch all day long. Didn't eat, didn't talk, just slept. We had him on antibiotics for 10 days. His cheek and ear area became very hard and swollen. It even seemed like it was affecting his speech and tongue. Obviously, we were very concerned and it took our doctor in Hamilton 2 days to return my phone call. Our last doctor would email a reply within hours, and definitely call back the same day. The outcome was that swelling is normal when he's fighting an infection....good to know after freaking out for 2 days!
Once he was off the antibiotics, he caught a cold. He's still fighting a bad cough, but a checkup with our local doctor confirmed nothing more was needed in the way of antibiotics. He's pretty much back to his usual self...except for his cystic hygroma. It is still hard, and he doesn't like us touching it. Even putting a shirt over his head makes him cry. Hopefully we can get some answers on Tuesday, and a future game plan.
I'm still in denial that we will be dealing with his for his whole life. I seem to live in a fairytale world where one day I will wake up and it will all be over! Time to get real, I think!

Follow up appt complete!

We had a follow up appt with our dr that did Kaiden's surgery last month...got good and not so good news. Good news that there is no nerve damage, he was nervous about his tongue since it was a little droopy, but it seemed to have corrected itself. He was very pleased with that, as we were all a little worried for awhile there. He was also pleased with how much the swelling has gone down. On the not so good side, he thinks some cysts have grown back behind his ear, and we may have to do more schlero back there. The area infront of his ear, he will hopefully "grow into," and the area under his chin is still a bit swollen. Next appt September...glad we have the summer appt free!! I have to admit I was hoping to hear, "it'll all go away and he'll look perfect!" I need to get out of this dream world I live in!!

Follow up appt is looming...

Kaiden's surgery has been over a month ago. I'm impressed that he is back to his rowdy little self. His personality and spunk are back, and I am so thankful that this surgery didn't change the amazing child that he is. It was a rough go for awhile, he didn't trust us, and thought we were always trying to hurt him. But yet he didn't like being away from us. That's back to normal too, he doesn't mind at all when I drop him off at daycare anymore. He'll even let me clean his swollen ear, and the incision has healed very well.
He is still swollen, and we were hoping by now the swelling would be much less. It's hard to know what to expect, as this is the first surgery we've gone through. We have a follow-up appointment on Thursday, and I'm nervous to see what the dr thinks about his progress. His chin  and ear are still noticeably different. I got my hopes up too high that his face will magically go back to "normal." I'm wondering now if that will ever actually happen. It's impossible not to worry that the cysts have grown back and that's why it hasn't reduced as much as we had hoped.

I guess we'll just wait and see what the dr says on Thursday...here's hoping for good news, and that this is a typical recovery!

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....