Thursday, April 2, 2009

Dirty Harry+Dopamine+Def Leppard

Pablo is still in the ICU. Dr M has upgraded his condition from critical to stable. The key reasons for this are Pablo's smoothed out respiration and heart rate, and his successful weaning off Dopamine. Pablo's temp has fluctuated between 38.1 Celsius (normal) and 38.9 (very high). The lab has identified the bacteria in his blood. It's the same strep infection that knocked him out a month ago.

This time, it's not running away even with a second antibiotic slamming it. Fevers have become routine for us in the past 321 days. But there's nothing routine about this one. We have been conscious to not alarm you over the past 11 months. Today is a day when there's no way to not alarm you: Pablo is critically ill. He is battling an infection that would knock a healthy person on their a**. Pablo has zero platelets and zero white blood cells. That's the equivalent of a cop in a gun fight with a totally awesome Dirty Harry hand cannon with zero bullets. He will be in the hospital for at least 14 days from the first day his blood shows no bacteria. We could be in there for a long time.

Jo Ann and her mom Patricia are doing the overnight. I am home with the dawgs. Tomorrow night will be my overnight shift.

¶ All last week, I dreamt of April Fool's Day pranks to play on people. I was looking forward to giving myself permission to laugh, to feel a part of instead of outside of. A couple of my clients were really going to get it. I had a good one for Grady. Even thought of a few ways to gently indoctrinate Pablo into the tradition.

Before I got into pranks, I was gonna do my usual Wednesday morning ride in the San Gabriel Mountains with my friend Peter Robbins. His daughter is a veteran of CHLA's 4 East; she is a leukemia survivor. Every week, we propel ourselves thousands of feet up the black road and talk. I slept through my alarm. Never sleep through my alarm. So I canceled the ride and made my way to the kitchen to start measuring out food for my breakfast. 30 seconds later, I heard Jo Ann's voice from downstairs. 'He's got fever. We have to go now.' I never mention this, but every time I recall moments like that while writing a post, I get the same desire: I want to punch the computer screen. I want to bloody my hand. I want to know what's inside the screen and I want to destroy it. The anger + desire to do something makes my mouth taste metallic. I am not making this up. I need a punching bag. Like the one in the shape of a boxer dude.

¶ Enough of that. Punching the computer will only make it worse. In our world today, it feels like for 321 days we've been on a hijacked airplane. Flying, full of fear, freaking. And coping, one breath at a time. Exhaling when no one's looking. We woke up on April Fool's Day—yesterday—to an additional plot point added into the mix: major turbulence in the form of Pablo's shivering + fevering. When he woke up, like most humans, he went straight to the toilet to take a leak. He walked out of the loo in our room, stood in the doorway and said, 'Mommy, I'm scared! My head feels like a bobblehead.'

That phrase 'I'm scared' can be heard in many ways in many different situations in life. In many cases it's hollow, rhetorical, lame. To hear Pablo say it is heartbreaking. To know you can't do anything to change how his body feels—he is using the word as a catch-all to describe the foreign feeling inside his body. The dude has had 321 days of foreign feelings. Today he has a new one, and like Def Leppard, it's not foolin.

¶ Everything I thought about my life is not true today. Nothing is true and nothing is worth anything when my son is lying in a giant hospital bed crying and burning up and scared and searching for words he doesn't have to describe feelings of pain no child should ever know. And so nothing I have ever dreamt is coming true today. Only songs of sadness and pain and minor chords and angst play in my head. There are always songs playing in my head. I think in strands of songs and lyrics written and sung by people who have had the guts to stand up and sing s**t I have no guts to say. Violent Femmes 'Good Feeling.' The Beatles 'Love Me Do.' Neil Diamond 'Forever In Blue Jeans.' Love And Rockets 'The Light.' The Smiths 'That Joke Isn't Funny Anymore.' Elliott Smith 'Everything Means Nothing To Me.'

For two days, scared and full of song, I show up. I talk to people. I say things. I am not really there. I'm surprised when I get hungry or thirsty. Someone who's not really there shouldn't have an appetite. Someone who woke up more tired than when he went to bed shouldn't be up writing anymore.

Good night.


tracy said...

Let that fever keep dropping with each prayer of love sent to you from all who hold you in our hearts.

May the morning bring that sunshine and new day. And Pablo's well being. This day shall pass.

Sending love

Tiwanna said...

“Endurance is not just the ability to bear a hard thing, but to turn it into glory.”

"Endurance is one of the most difficult disciplines, but it is to the one who endures that the final victory comes.”

These quotes of endurance remind me of you guys and I pray that your endurance grows stronger with each day.

Line said...

I am prying for Pablo.
Please let me know if there is ANYTHING(!!!) we can do to help you in any way



Anonymous said...

We're sending lots of love your way, Pablo...all the way from Virginia. We hope to hear that fever stays down and you feel better soon.

Carrie and Emma

Greg said...

Wednesday night our entire spin class sent all our energy to Pablo in ICU. Let our higher power give P the strength to fight this so very wrong infection.

Anonymous said...

Just had to leave a post, or try to. I want you to know we are thinking of you all, and praying. Also hoping and wishing for Pablo to feel better and soon. He is a hero and strong and brave, very cute and special. He doesn't deserve any of this, no kid does. But he is strong and a fighter, we will continue to ask God to wrap all of you in His arms and heal Pablo.
wishing I could find that magic wand,
Jennifer and Hollyn

Jessica said...

Sending lots of healing thoughts Pablo's way!!!

(Polly's HP friend Jessica :) )

travis zdrazil said...

We are praying for Pablo and your family. We understand all too well what you all are going through. Hang in there...say hi to Dr. Mascarenas for us...on second thought, never mind. After being in the hospital for 30 something days with Corey, we were kinda mean and cranky towards him.

Anonymous said...

Jeff, I'm simply astounded that you find the wherewithall to not only own the feelings you have, but to continuously put them into words with such simple eloquence and conviction. Thinking of you all with warmth and hope and postivity.
Greg Roth