I assumed I'd be a little more comfortable with the idea of my boy having surgery after everything he's been through since July, but it was just as emotional as the first time I watched him walk through the operating room doors. After 2 hours, our boy awoke - quiet, but doing well! Because he will be getting his bone marrow transplant, it was necessary to remove his VAD and put in a central line, in order to be able to give him the numerous mediations simultaneously. I was a little taken back to see a line coming directly out of his skin (with the VAD, when he wasn't accessed, all you saw on his chest was the bump where it sat under the skin. Shortly after he left the recovery room and was transfered to post anaestesia he was nearly screaming in pain. He had 3 seperate incisions, but because of all the manoevering done inside to remove and place, he was immensely sore - sore enough that he asked for something to take the pain away. He never asks for anything, so this is when you really know something is taking over. They also placed the NG tube, so that they could start the feeds - he hasn't been eating atall, so it's necessary so he can get some sort of nutritional intake.
He was allowed to go home that night before coming in Tuesday to be admitted - Daddy slept in Keian's bed and Keian slept with me in ours. When I woke up that morning, he was in the exact same position that he fell asleep in. It was another long day Tuesday, as we sat in the clinic from 10:30-5:30 before we were finally admitted upstairs. We were brought into 3B into room 6 - one of the smallest rooms on the ward! Only for a couple days they said. A couple days? Yes! They will be sending us home tomorrow, and we will be allowed to be home for the long weekend and return to the hospital for the remaining month on Tuesday.
For anyone that truly knows Keian, they know that he's a big goofball. He's crazy, loud, sometimes annoying (haha), a little bit nuts and my bestest boy! This is how you'd usually see him, but it seems that when we're in the hospital, he's very withdrawn. He rarely responds to the nurses and doctors. The nurse had mentioned that many kids withdraw as they're internalizing the trauma. I wish he would scream at me or talk to me about how he's feeling, but I think right now at his age, it's hard for him to verbalize everything that he's going through and how it all makes him feel. I don't think he even understands what he feels. Today, he's been goofy again...even calling his nurse crazy. "You're crazy, but all the good nurses are crazy". It's a little overwhelming having to learn how to take care of all these new lines. Tonight I had to flush and re-line his feeding pump. We also learned how to do dressing changes, clean and replace caps on his central line and emergency care. All a little scary.
So, tonight we'll try get the best sleep possible and return home to get refreshed!
"Turn your face to the sun and the shadows fall behind you"