The morning of, Karsen woke up obviously hungry, but I did everything in my power to keep him busy and distracted. We actually had pt at 8:00 so that killed an hour. When we got down to UC Davis we checked in at 11:00' like they told us to, but was delayed another hour because of another emergency. I really was frustrated or upset, these things happen, my child will live, something else is more urgent. Plus, Karsen was doing amazing. As long as I snuggled him and let him play with the iPad he was fine. When we got taken back to our bed, we got seen by the team of people working on him. Five people in all. I felt very protected and safe. The staff there was amazing, very thorough and explained everything to me. Well, with the exception of the Botox specialist, who had poor bed side manners, and was just awkward (I don't know how else to explain it). When they finally took him back his team made sure he was happy the entire way, they all took their job very seriously, one nurse (make that six people on his team), her sole purpose was to make sure Karsen didn't cry. :-) I was really pleased with everything.
When the anesthesiologist went to put Karsen under he reminded me to stay strong for him. Wow, didn't know how much I needed to hear that. I was able to pull through with no tears up until I got the ok to cry and kiss Karsen goodbye. Tears were flowing. It was so hard seeing Karsen so lifeless, it took me back to his MRI, which was much more scary than this.
I was showed to the waiting room where I resumed my tears for a good ten minutes. I called Kuper but could only manage to talk for a few minutes. I was told ahead of time, that it could take up to four hours. So, I posted up. iPad ready, text my friends, my family, and all my prayer warriors. Just when I was getting settled (about 45 mins), the nurse in charge of no tears came to get me and told me he was ready. What?! Yay! They waited to walk him to recovery until I was present. There we walked, all six of his team and Karsen snuggled up. All I could see of him was his little nose and mouth where they had a breathing mask.
Once we sat down in recovery the anesthesiologist spoke to me about the procedure and warning signs to keep an eye out for. The whole thing went flawless. He did great, didn't need to incubate him. Praise God. The Botox specialist then talked to me about how his end went. He ended up not using a full dose, and only did two out of the four glands, he didn't want to damage any nerves. I was grateful for his least invasive approach but also hope that we didn't go through this whole procedure for nothing.
After two hours in recovery, he woke up immediately signing cereal, he was hungry. We got cleared to go home at 4:00. I was thrilled. I scooped up my sweet boy and headed out to our car. He then proceeded to eat enough in that next hour to make up for the rest of the day, one hour later, he puked it up :-( but wasn't bugged by it, not sure if he over ate or if it was the anesthesia. Either way, it was a small hiccup.
We are four days post injections, today as the first day it seemed maybe ten percent better. It can take up to a month for the full affect to come into play. Please continue to pray for my little man.
I forgot to mention how at peace I was while in the waiting room. I knew and could feel Gods presence. So, thank you for all the prayers.
Here's some pictures the day of.
All in all, Karsen has done really wel. He has some slight bruising from the injection site but that's all. Fingers crossed this works!
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