Meanwhile…Back at Cedars

It’s been three and a half years since we left Cedars-Sinai Hospital after Charlie’s initial five-month stay when he was born at 24 weeks and weighed only a pound. We’ve had doctors’ appointments and visits and it’s always bittersweet and PTSD-ish being in those buildings. But now we’re back and it’s uncanny how quickly everything becomes so familiar again—it seems like I have a specific memory of every spot in this complex. Here’s where I was sitting when I found this out; I was standing at this window on my cell phone when I called my sister to tell her that Charlie’s twin brother had died after 12 hours; this is the elevator we took for Charlie’s 3rd and 4th surgeries; I was eating a banana in this spot on this day; I was feeling this way when I walked out onto the plaze on the day the doctors were worried about his head circumference, etc. Not all traumatic stuff—lots of good memories, too, with everything, the good and the bad, swathed in gratitude and love for so many of the people who work at this place. And now I guess we'll get some new place-based memories since the Pediatric Intensive Care Unit has moved to a glittering new structure that was under construction when we were last here as residents.

The photo above was taken when Charlie finally fell asleep after 12 hours of poking, prodding, ultrasounds, x-rays, and CT scans. We went in this morning for our yearly check-up with Charlie’s neurosurgeon. He’s been having this issue with a distended hard stomach and we’ve been to the pediatrician twice in the past week thinking it was just constipation and treating that. My worst fear was that it had something to do with his shunt and I was googling “shunt malfunction” by the hour but he had NO symptoms. But it was malfunctioning, damn it. The cerebrospinal fluid that drains through the shunt to his peritoneal cavity because of the Grade III and IV intraventricular hemorrhages he had the day he was born was not being absorbed properly, thus the distended stomach. After a series of ultrasounds that determined what was going on, he was admitted back into the hospital. (I just realized I didn't have to look up a single one of those terms—my Cedars-sponsored medical training is still resident in my own brain!) 

It breaks my heart every time Charlie says he wants to go outside, or asks when we’re going home. We try to explain it as best we can but the blood work, IVs, and multitude of tests where he had to remain very still were not easy. The worst is that after the surgery tomorrow he’ll have an external drain and will basically not be able to move much or get out of bed at all for the duration until the shunt is put back in. If there’s no infection, that could be a matter of days. If there is, it could be much longer. UGH. But like last time, we’ll all do what we have to do and be very very grateful for the kind and expert staff that he are lucky enough to have taking care of him. Here are some photos from the board in his room. They all use the name Charlie goes by lately, “Scoot,” and have told everyone that he likes to talk about garbage, garbage trucks, and recycling!

As terrified as we are, there’s nothing like this kind of event to put things in persepctive and make all the things I thought I was anxious about yesterday seem completely meaningless. And at the same time, my heart goes out to all the people who are dealing with sooo many much worse health crises, including many children and their parents. Hey, if we could just be here once at the beginning of each of President Obama's two terms, I can deal. But please, as I said on Facebook, if you want to send any kind of prayer for Charlie, we welcome all good wishes from the faithful, the non-faithful, or even craven idol worshipers. I remember once during the worst of it in 2009 I overheard a group of elderly black women talking about their church and I literally chased them down the hall to ask them to pray for Charlie. This isn’t a time when I contemplate whether such things “work” or not. Must get some sleep. Love to all.

Comments

[Jane]

Danny, I can't even imagine how this feels for you and Kendall. My heart is hurting for you and for Charlie. I will pray that all goes well, quickly, and with as little pain for the little man as possible.

Love to you all.

[margalit (@margalit)]

Adding Scoot to our misheberach. Hebrew name?

[Maria Sosa]

Well, this sucks for Charlie. And for you and Kendall. I have no idea to whom or what I will be sending prayers, but I will put them out there with all my heart.

[Barbara]

Refuah Sheleimah Charlie! Thinking of all of you, and so sorry we didn't get to see you last month!

[amba (Annie Gottlieb)]

LOVE YOU CHARLIE!!

[Karen (Hunter's mom)]

Oh no!! I dread the shunt malfunction day for Hunter, and hope that Charlie comes through with flying colors as soon as possible. My thoughts and prayers for a speedy recovery!! xoxo

[Danny]

Thanks! For the record, Charlie's Hebrew name is Chaim Yehuda Shmuel. Mine is Moshe David and Kendall's Yehudit Esther.

[Carolyn Greenberg]

Prayers to you all!

[Wendy Leve-McClevey]

Danny,

My heart is aching for Charlie and for you and Kendall. I think I can speak for at least your Facebook and Jew Eat Families, if not for everyone that our thoughts and prayers are with you.

Thank you for keeping us updated. And give Charlie a big hug and a kiss!

[Marci Karoll]

Wishing you all a speedy recovery!
Marci and Sandy

[Erin Shipka]

Prayers for Charlie (and mom and dad) !!!

[E]

Go get them Charlie! All of your fans in Chicago are rooting for you!

[Barbara from Peterson School]

Following E's comment above, Charlie, all of your fans in London are rooting for you too! We are sending our prayers, our most positive thoughts and 'vibes', and all our love to you all... B & K

[Cynthia]

Charlie,
Please heal quickly. Your friends from Boston are coming to see you. They will be disappointed if you can't play with them.

Kendall & Danny,
Be strong, as you were before.

[Kevin Davis]

Our little family sends our love to yours. Your posting, as usual, moved me.
With love, Kev, Martie & Sonny

[Marjorie]

Love and looking forward to a picture of Scoot smiling again. I'm thinking about this bittersweet poem. Hope its okay to make this post so long?

Cartoon Physics, part 1
Nick Flynn

Children under, say, ten, shouldn't know
that the universe is ever-expanding,
inexorably pushing into the vacuum, galaxies

swallowed by galaxies, whole

solar systems collapsing, all of it
acted out in silence. At ten we are still learning

the rules of cartoon animation,

that if a man draws a door on a rock
only he can pass through it.
Anyone else who tries

will crash into the rock. Ten-year-olds
should stick with burning houses, car wrecks,
ships going down -- earthbound, tangible

disasters, arenas

where they can be heroes. You can run
back into a burning house, sinking ships

have lifeboats, the trucks will come
with their ladders, if you jump

you will be saved. A child

places her hand on the roof of a schoolbus,
& drives across a city of sand. She knows

the exact spot it will skid, at which point
the bridge will give, who will swim to safety
& who will be pulled under by sharks. She will learn

that if a man runs off the edge of a cliff
he will not fall

until he notices his mistake.

from Some Ether, 2000
Graywolf Press, St. Paul, Minn.

[Fiona]

Thinking of you all and sending wishes for a comfortable and speedy recovery. Charlie is a delightful little boy.
Love from his fans over here in Melbourne

[Amy]

We are sending lots of prayers to you all. We love Scoot so much and can't wait to see him out on the playground again. Please let us know if we can help.

With love - Amy and Vincent "Turbo"

[Julie R.]

Love love love love love...coming your way.

[lori alan]

Sending so much love, peace, patience, grace, ease, light, glorious, miraculous healing and more LOVE to Three Musketeers!
I LOVE YOU ALL SO MUCH....you are wonderful parents, and you need to know that...you will get through this!!! He is soooooooo strong, and funny and resilient!
Peace and blessings:-) Lori