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. 



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