Our journey through life with hemiplegic cerebral palsy and infantile spasms

Monday, October 20, 2014

Surgery Results

My goodness I have taken way too long to update everyone. Sorry friends. Life got busy. 

Well, surgery has been a huge success. Not for one second do I regret it. For the most part Karsen barely drools. Some days, when he's congested or concentrating really hard, he seems to drool a bit but no where close to what it use to be. No more bibs! I told myself I was going to have a bib burning party but couldn't get myself to throw them out for fear that he would start drooling the minute they would be gone. Silly, I know. So instead, each time I find one, out it goes into the trash. And each time I throw one away, I feel happy for Karsen. So happy he doesn't have to deal with the constant rashes or irritation from drool or the puffy, bothersome bibs that had to be so thick he'd sweat during the summer. So, GOOD BYE bibs, hello big boy Karsen. 
Look! He looks like such a big kid!!! 

The surgery itself was a rough bout. Karsen's time slot wasn't until 11:00AM which meant I had to keep him distracted from how hungry and thirsty he was from 5am (when he wakes up) until they take him back into surgery at 12:00PM. He did a lot better than expected. As long as we had planes playing all was well in the world. Just before they put him under, they gave him "happy juice" as they call it. If you've had a kid put under for any reason, I'm sure you've had the pleasure of watching your kids after they have taken the "happy juice". Karsen was hilarious. He kept laughing over nothing. Poking the animals on his hospital gown, and giggling over me touching his nose. It wasn't only good for him to chill and relax, but it helped calm my nerves seeing him happy.
Once he was back and under, I was off to get some much needed food but I really couldn't eat. I had never had that happen to me before. Normally I'm a stress eater, this was a change for me. So I got on my phone and texted a few people, called Kuper and cried of course (even though he said "hey! Look you made it with out crying" and then I cried), and cracked open my bible. For five hours I couldn't take my eyes off the status alert they had with patient numbers accompanied by the status of their surgery. It was comforting and nerve wracking all at the same time. Since they said it would only be about a 2 hour surgery, and five hours had passed I was not sitting easy. But truth be told, I handled it much better than ever expected. I can only give it to one thing, God. I felt at peace, as if He were sitting right next to me say "I got this, don't you worry." When the board finally changed to "in recovery" almost immediately a nurse came out to walk me back. He was just starting to wake up when I walked up to him. He had two nurses, his surgery, and the anesthesiologist by his side. In that same moment of me knowing God was with him and the team surrounding him, Karsen went blue. First his nose, then his lips, then his face. His whole team jumped into action, with in seconds he was back to normal. It was scary but I never worried once. Weird, right?! We waited in recovery for over an hour, waiting to see if he was ok to move to the regular floor or if he would need to be moved to the PICU. After one more time of Karsen turning blue again they decided it was better safe than sorry to move him into PICU. Now let me explain. Karsen was having a hard time breathing, or getting air in is a better way to put it. They gave him morphine for the pain (which can labor breathing), his airway was weak from being in surgery with a tube down his throat for over five hours. The two made for a not so good combination. As soon as the morphine left his system he would be fine. 
Off to the PICU we went, after a quick visit from Kuper and Karter (toys and snacks included). My sister came to visit me, I'm still very grateful for her distraction. She was there to witness yet another one of Karsen's breathing issues. The staff at UC Davis was amazing! They were quick and very nurturing. I would go back there in a heart beat. They got his breathing under control right before Karsen was out for the night. My sister and I talked, laugh, at chocolate and then to bed at went once she left. The next day after all the craziness, we were discharged! The morphine was out of his system, his pain levels seemed fine, his breathing was 100% better and we left, with out a single bib. :-) We haven't looked back since. 
So, yes, the actual surgery was rough but it was SO worth it. And never once did I ever feel like I could lose my little man, God was sitting right next to me, the whole time. Thank you all for all the prayers and support through all of it. 



Monday, August 18, 2014

Tomorrow's the big day

At 1:30PM tomorrow Karsen will be going in for surgery. We feel prepared and ready... well as much as you can be. We have high hopes this will be successful. For those of you that know me well, or know Karsen well, I can't wait to burn his bibs for good but I know better than to expect 100% this will be it. Although I am human and my hopes are up... hard not to be when we have exhausted all other options. 

So if you have a brief moment please say a little prayer. Please pray for the team of surgeons, pray they don't damage any facial nerves (it's super rare to happen but still can), pray for amazing staff that care for my little man as if he were their own, and lastly pray for success. 

I'm nervous, like any other parent, but know that God is watching over Karsen.

Hopefully this is the last picture I post of Karsen with a bib on....


Thursday, August 14, 2014

Holy smokes I've been slacking

Since we have some big stuff coming up for Karsen I figured I had the time to update my blog really quick. Yikes! I also notice it's been over two months! What can I say, we've been busy enjoying summer and enjoying a break from chaos.

Karsen is doing amazing. He's starting to run, which makes me super nervous because he ALWAYS falls when he does, but hearing him laugh uncontrollably as Karter and him play tag is the best noise in the world. I've been waiting for this moment, the time where Karter and Karsen can play like "normal" brothers. Even though Karsen can talk, he does a really good job of letting his older brother know if he doesn't like what he's doing. They've also started the true boy rough housing. I welcome it in our house, I grew up rough housing and still love doing it to this day. Some of my best memories are of me running away from my dad squealing down the hallway as I would hear "I'm going to get you!". And here I am, 20+ years later doing the same thing. Making memories, loving every minute. 

Karsen went to a two week summer camp that Karter's preschool puts on. It was chef themed and about the cutest thing you could see was my two boys with aprons and chef hats on. They both had so much fun, Karsen fit right into the routine of school, made me feel more confident in him starting preschool. Karsen's school started August 13th he hasn't gone yet though. I'll get into that later. 

We met with Karsen's new ENT to see if we needed to give Botox another shot or if there were any other options. After much research and discussion we ultimately decided to go forward with surgery and remove two of his salivary glands. I've always seems to take forever to get insurance to approve anything, so went went forward with the paper work and talk and researched. To my surprise insurance approved it three days later. So not even a week to process everything and we had a surgery date, I also expected it would take well over a month to get in. We're going in this coming Tuesday. It all fell into place which made me feel more comfortable with our decision. So because Karsen's surgery is so soon, and he can't be exposed to nasty germs before his procedure, we decided to hold off on preschool until he's recovered. Hopefully he'll get to start preschool with out wearing that darn puffy bib. 

We've introduce some of his constraint therapy here and there just to get him adjusted to his torture device (it really is). He's been doing amazing. He'll turn pages in a book with lefty and is starting to try to pick up toys and release them. I've been blown away by him, once again.

I've been reading this book called The Explosive Child. It's been really helpful on figuring out Karsen and his behavior. I'm only a little bit in but it's already helping. If you have a child with difficult behavior and you have no clue why, this is the book for you. 

Life if pretty good in the Williamson house. We are busy with work, school, soccer (yes, I'm coaching Karter's team), therapy appointments, MOPS (craft coordinator this year) and the usual doctors appointments but we are beyond blessed. 

Couldn't leave you with out a cute Karsen pic, so here's a few.

The torture device
Chef summer school (look at lefty)
Look, they do like each other... Sometimes ;-)