Notes from the Clink

We're on day 5 of being holed up in the hospital. You would think that this is something I've grown use to due to the last two times being stuck in the cancer pit but that just isn't so.  After months of being free to roam about you tend to forget what it feels like to have to sit bed side to a sick child.  I always find that I enter the same patterns when we're admitted.  The first 2-3 days, I'm happy mom abiding by the hospital rules and regulations.  I happily sit in the play room, play "shopping" and do endless crafts that we cart off to our cell ..err room and hang on the walls. Then days start to run together, I find myself repeating questions, or having a conversation with Brinley's nurse, and pausing because I remember having the same conversation yesterday. By day 4, I want answers, answers that cannot be obtained by looking in a book, or hassling the doctors about.  These answers are in the blood work.  Every morning at 4am the nurse enters our room to draw blood, and every morning at 8am the results are in. I sit there waiting for the good, or bad news. Good news being that we can go home, her counts have picked up and we are FREE, but instead I get the bad news, "her counts are up but not enough" or, like this morning, "her counts have dropped, you're probably going to be here for a few more days" with each 8am crash, I beg the day to move by quickly so we can get to the next 8am news.

Today has been particularly rough because Brinley hasn't been feeling well.  Last night she had her IVIG transfusion where they checked vitals every 15 mins over the course of 4 hours to make sure she wasn't having a reaction.  This stretched into the early morning for us, so when 8am rolled around neither one of us was ready to wake up.  But the hope that her ANC was up to 200 forced us both to get ready for the day.  Only to have the nurse confirm that her counts actually dropped from 137 to 105...fuck (sorry mom).  To top that off, her mouth swab came back positive for a viral infection and we're now on "contact isolation" meaning we're on lock down.  No playroom, no walks, just sit and wait.  Of course even sitting and waiting can't go smoothly, nope not today.  Brinley is now suffering from migraines.  After a dose of Oxycontin she was still crying her eyes out in pain, so what the heck lets give her some morphine and see if that helps.  After sitting on her bed, holding her, and rocking her for a good hour, she pokes her little head up and says, "mom, put me down I have to puke".  Sure enough, she wretches enough to cover the floor, grabs her head and starts sobbing.  I'm scrambling now to ring the nurse, reassuring her that it's ok that she threw up on mommy's socks, and rushing her to the toilet before I get caught in the line of fire again. After getting her cleaned up she's given a dose of zofran and now she's passed out, for what I assume will be the rest of the night.

...and now I will quietly sit and wait for 8am