I thought I'd start with the funny quote of day for a change. Nevan blurted this out at about 11:00pm on Saturday night. He had started to feel better after the second bolus of IV fluids and was caught up on his meds. Anita and I were exhausted and frustrated from the events of the day. The random comment helped bring us back to reality a little. And that reality is no matter how far he falls away our little boy is still in there. Behind all the puking and pills, medications and mood swings, steroids and syringes and screaming is the Nevan we have known for over four years. It's difficult to remember sometimes. Every day is filled with more unpleasantries than happy moments. No matter how hard we push him he always amazes us and has yet to hold it against us.
It's now Tuesday and Nevan is still in hospital. He has his own room again but this time it's closer to his new friend here. Yet still neither of them are healthy enough to play with each other. It doesn't feel the same here now. It's like we are just visiting I guess, and we are. He definitely is not as comfortable as he was when we were here before. His walls are bare and he doesn't have half of the toys here he had before, still twice as many as most kids have here.
Today is my first day back. I come with a chocolate dinosaur lolly in hand. He makes eye contact with the treat but not me. I asked for a hello and didn't even get that. I don't push too hard. He's been depressed for a few days now. I don't think he realized he would have to stay this long. We went down to the cafeteria and got some lunch. He requested cantaloupe. We say goodbye to mommy so she can have a much needed break after a straight 3 day shift. She will stay again tonight to keep life consistent for his short stay. Most of my visit is a nap for the afternoon. While he's asleep I decide to try out his new stethoscope. We will be required to listen to his stomach at home everytime we use his NG tube to confirm its placement. If its not in the stomach it will be in his lung. It's as scary as it sounds but rarely happens they say. His heart beat is easily double what it should be. I listen to mine. I can barely hear it. I have more body 'fat' than he does. If you know me there isn't much fat! He's so thin you can see his heart pumping and pounding in his chest. You can count his heart rate visually.
We have left over Chinese food together. He eats a few noodles and tons of broccoli heads. He's happy for a while. He even does his meds without a fight. We play some video games for a while. Mommy then shows up with Nylah. My girls.... At this point it's fair to say that what ever problems we have been vocal about in this blog are just the ones on the surface. Every relationship with each other has been and is constantly changing. Nevan and Mommy, Nevan and Daddy, Nevan and Nylah, Nylah and us, our marriage, grandparents, uncles, relatives, friends, co-workers. Soon this will be over and Nevan will come home and stay for the most part. But life will never return to the way it was. Perhaps Nevan will be stronger because of this battle. Maybe we all will too. The world just looks different now. It's important to remember as we take this journey. Cancer kills everything....If you let it.
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