100 days in the hospital...and counting

Well, today marks 100 consecutive days in the hospital.  It's hard to believe really.  And hard to swallow when we still don't have a graft in yet.  We are day +12 from the second transplant though, so those counts will hopefully be coming in any day now.  Please Lord...let them come in sooner rather than later.

It's been a tough 2 weeks now, down here in the PICU, and last night was one of the roughest nights yet.  Rowan started showing signs of what they call "ICU psychosis" or "ICU delirium".  He was so agitated, and out of control one moment, and then out the next, but could only sleep for about 5 minutes at a time.  Two nights ago he pulled an iv out in his sleep, took off his central line dressing, and picked at his shunt scab relentlessly.  Last night he thrashed around the bed, and repeatedly pulled of his monitors, pulled off his blood pressure cuff, and dressings.  He went through 3 different BiPAP masks, pillow, high flow nasal canula before we could find one he would keep on last night. 

Today, he does not want to open his eyes at all.  He moans and cries if we try to make him sit up or even look at us.  He seems to read what we write on the white board, but just closes his eyes immediately afterward. It is beyond heartbreaking.  Who can blame him for being tired of all this, who can blame him for feeling like he is going crazy?

There is really nothing we can do though, but love on him, try to console him, and wait.  The waiting is the hardest part.  We are waiting for counts, waiting for his hearing to return, waiting for him to fully wake up, waiting for our boy to come all the way back to us.

Having the family together has helped, but it is mostly us that is has helped.  Zoe and Ian, and Grandma Judy, have both been great.  They have tried so hard to cheer Rowan up, but been understanding when he just doesn't respond or isn't up for it.  They have found ways to pass the time as well.  Both of them (actually all 3 of them) are so artistic.  Ian has been working on an art project for school, using the hospital window as a light box for tracing his drawing. 

Zoe made the most adorable carved (artificial) pumpkin for Rowan's room.  It's Barry from Cloudy with a Chance of Meatballs 2, and it's perfect.  She carved and colored it by hand and Ian made the strawberry leaves.

I will be so sad to have them leave tomorrow.  Especially since they haven't been able to truly play with their brother, like we all would have liked.  But, you do what you have to do.  You make the best of it.  You put one foot in front of the other.  You take it day by day, and even hour by hour.  You carve fake pumpkins, you draw, you hug, and you pray for things to get better.