Tuesday, August 26, 2008

PICU, Take Two

The CHLA brand on Pablo's bed sheet

Jo Ann spent most of the day with Pablo and I went home to catch a few hours' sleep and catch up on work.

Pablo is doing very well, and is medically ready to leave the PICU. Thing is, there are no open beds in 4 West, the soft tumor floor. This is where Dr M wants P to be, and it's also the place we feel most at ease. I am not sure the precise bed count in 4 West, but it can't be more than 12 or 14. Not a lot when you consider the number of kids who need those beds.

The reason we like it so much there is that the nurses and support staff are incredibly knowledgeable with cancer and all the tangential questions and issues that come up around it. Another reason is the bond of being around other cancer families. Saying 'hello' to another parent or child in 4 West is carries a significance. We are all sharing an experience. 'Hello' encapsulates the omni-dimensional reality of the cancer family: mystery, anguish, sleeplessness, self-blame, confusion, hope, fight, faith, endless questions–and joy derived from small victories.

All this talk about 4 West brings me to my next point: part of our job is to fight for what we believe is important for Pablo. Sometimes it's a medical issue, others it's something like hospital real estate. Whatever it is, there are a number of issues every day. They run the gamut and require me and Jo Ann to determine which of us is best suited to deal. Often the determining factor is who is less tired or tweaked.

Having a sick child calls on parents in ways that wedding vows cutely, but not precisely, address. Creating a safe and effective bubble of care around your child is a full time job. Hospitals, like large corporations, are notorious for labyrinthine structure in the physical and administrative realms. Finding out who to talk to–the right person–is a fact finding treasure hunt. Then, actually locating that person is sometimes another treasure hunt. As I write this, I am kind of wishing the 'right' person would pop in here and tell me we are moving
to a regular room.

Pablo is fine in the ICU - bed, movies, pillow, the watchful eye of a nurse at all hours–and that's the only truly important thing. But we are fighting cancer as a family. When there's no place for place for Mommy or Papa to sleep, we fight the next day's battle with less than a full unit of energy. When you layer in the emotional scatter bombs that come up all the time, sleep is more than a convenience or a luxury–it's a necessity.

Jo Ann is staying tonight. Maybe P will let her into his bed–she is smaller than me, and can fit in there without cramping Pablo's style. I wish them both a good night.

Grady and I are at home. He's already gone to bed, and as soon as I sign off with you, I'm doing the same. Tomorrow is Grady's first school Mass. His school uniform on Mass days includes a tie, so we will be taking photos in our front yard. Taking pix on the first day of school, or any other special day, is a tradition in our family–especially when we're not all here to actually send one of the kids off on that special day.

Lastly, I want to let you know Dr M came by around 8 p.m. tonight. I saw him through the window of our room, and my heart jumped. He was gone Friday and Monday (yes, he actually takes time off to be with his family!), and I hadn't seen him yet today.

He came to check on Pablo and to let us know the pathologists had started on the left tumor. As Jo Ann said in her earlier post: all our intentions have to be LOCKED on that left tumor being favorable histology!

We should have the results no later than end of day tomorrow. We'll post as soon as we have them. And, hopefully, we will be back on our beloved 4 West floor of the hospital.


Unknown said...

Hi Jeff, Every minute counts so much with you guys. I can't believe what you have been through since the last time I checked up on Pablo's blog. Please oh please I hope you get a room today so you can all be together with this awesome united front you have created.

Unknown said...

Thinking of Pablo and sending him all my strength! You guys are doing amazing. Love you guys!

Paige said...

Every ounce of Orloff intention is going towards that very positive histology. Meanwhile--I am constantly amazed, Jeff, by the eloquence with which you are sharing this experience, in all its terror and tenderness. Thank you--I hope putting this into words brings you some peace, because I know that everyone who is thinking of you guys through this time is so grateful to you for doing it.