I can't even believe we are here again. Awaiting Ty's third major tumor resection. If it wasn't all in his brain, maybe it wouldn't be so scary, but really… how many times can we choose to open up my poor baby boy's skull? This has been such a difficult decision and we are completely terrified, but we are also so hopeful.
Before going to sleep on the eve of surgery, my mind is absolutely racing. But my thoughts are so intense and so scattered that I can't even organize them in order to put them down on cyber-paper. Instead, I can some of our most intense feelings in simple terms...
Lou and I are more scared of Ty losing his speech, motor skills or other brain damage than we are of losing our precious baby in surgery. The whole reason why we opted to do this is to make things better for him and we fear the regrets we will face if it doesn't go well. As a result, our anxiety level is at an all-time high, and we are having a hard time keeping ourselves in check. Today has been a tough day with Ty, which makes us so sad in case, God forbid, things don't go smoothly. We want to treasure every minute with Ty, but today he really didn't allow us that. He was either sleeping or miserable all day. And by miserable, I mean unbearable. The steroids make him so angry, it is impossible to calm him down at times and that is just not Ty. He is not feeling or acting like himself and that makes us so sad.
Considering what we are faced with tomorrow, we managed to have a relatively normal day today. We were visited by family and friends. We ate (so stop worrying). We did laundry (in fact, I even stepped out to buy a new outfit so I could wash the one I've been living in). And this evening, Lou and I left the sleeping Tyrant in my mom's care so we could grab some well-deserved sushi and beers! It felt a little wrong to leave, but without those spontaneous moments of solace Lou and I would surely fall apart.
Now I am going to crawl into bed next to Ty and close my eyes. Don't be jealous, but look at what I get to snuggle up with right now :) I hope I don't bother him with all of the kisses I will be placing all over his head and I hope I can find a way to actually get some sleep in the midst of all this chaos (the internal and external chaos that surrounds me). Surgery tomorrow won't begin until about noon and it will go for at least six hours. We promise to keep you updated as often as possible. Thank you so much for your continued love and support. XOXO, with love from the Campbell's.
By the way, just a quick side note. After five shunt revisions, Ty's scans show that his ventricles are back to normal in his brain. So much for the unexplained chronic hydrocephalus that kept Ty on morphine for six months. The new shunt is finally a huge success!