It's hard to decide what to write. I feel like I should focus on all the wonderful, positive things about our situation, all the tender mercies, all the amazing people....but I also just want to complain and vent. So, I will just be honest and try and let these posts be theraputic, whatever that may bring.
Last night he slept through most the night. Although for the 3rd night in a row he didn't fall asleep until after 11 - so late for him. He's still asleep now. He woke up once while they were taking his vitals and was in pain. His little body tensed up and I could tell it hurt when I moved him. He asked to "give mommy hugs" which means to hold him chest to chest bear hug style, but when I picked him up he was so rigid and stiff and couldn't relax. I called for more pain meds. I asked him where it hurt and all he said was "mommy kiss it better". He's said that a lot the past few days. That has been the hardest part for me.
The Port -
I hate it and I love it. I hate it because I hate that there is this permanant (three years seems permanent to me) forgien thing in his body that will be a site of possible of infection and soreness and a reminder of his illness. I love it because it's helping him get better. It's an amazing blessing of modern medicine. I haven't even really seen it yet. It's covered with mounds of bandaging.
The IV pole - Hate it
I wish they would just let me silece it when it beeps so loudly so often especially in the night. It makes my blood boil. Espicially when it wakes up my baby. I have silenced it a few times but it just goes off again after a few minutes until I can track down a nurse. Also, it's so annoying dragging it around with him and constantly making sure he's not getting wrapped up in it or that it's pulling at is chest. And I just hate the idea that he's hooked up to a machine 24/7....but again, love it because I know it's helping him.
The staff - Awesome.
The social workers - Awesome. Especially the one who found me when I was folded up outside Lincoln's room on the floor sobbing uncontrolably two mornings ago when I couldn't let him eat. I and needed a break and finally turned Lincoln over to Ryan after 12 hours of holding him. She kindly took me in a room and listened to me cry and vent. It's funny doing that to a complete stranger. But I knew that's what she was there for and I was grateful.
The dogs that come visit the patients - Awesome. Especially the ones with painted toesnails who wear sunglasses.
The other patients - Not even a word for how awesome they are. Especially Stevie and Garrison. They are 9 and 10 and have taken a liking to Lincoln. They hang out in our room a lot and answer all my questions about what it's like to have Luekemia and remind me that kids with cancer can still be happy.
My parents. - Best in the world. Drove 30 plus hours practically non-stop to be here.
He just woke up. More later.