I Got a Right to Sing the Blues

My new iPod has a built-in speaker and I’ve been playing music for Charlie in his crib in our new digs in the Cedars-Sinai Pediatric Intensive Care Unit. One of the first songs I played for him was our friend Carole Cook singing “I Got a Right to Sing the Blues” written by Harold Arlen and Ted Koehler. The song has been covered by everyone from Frank Sinatra and Rosemary Clooney to Billie Holliday, Louis Armstrong, and Ella Fitzgerald. Charlie loved it and was moving his arms in beat to Carole’s brassy rendition. And frankly, who has more of a right to sing the blues than our son?

I got a right to sing the blues
I got a right to feel low down
I got a right to hang around
Down around the river

I got a right to sing the blues
I got a right to moan and sigh
I got a right to sit and cry

Say what you choose
I got a right to sing the blues!

Here's our friend Carole letting it rip:

 

We’re still in a holding pattern waiting for the all-clear for yet another surgery in which Charlie will get a new VP shunt. This morning Charlie got a CT scan and he’s due for an ultrasound to check on how the EVD (external ventricular drain) is working and if the fluid in Charlie’s peritoneal cavity has absorbed. Because of all his scar tissue, it’s tricky for the surgeons to find just the right spot to place the catheter on his shunt. If the shunt keeps malfunctioning, the surgeons will have to consider other areas in his body such as the heart or lungs to absorb the cerebrospinal fluid but those carry greater risks so we don’t want to go there. It’s possible if all goes well that the surgery could happen later this week but it’s likely that we’ll have to wait a bit longer. That’s okay—when we leave this time, we want to stay away for more than six days!

The PICU staff couldn’t be nicer. It’s a much different environment than the NICU—eerily quiet much of the time except for the occasional wailing of a child (this unit of only eight beds houses babies to 18 year olds). We have a private room with comfortable chairs and cots and even our own bathroom. One of the unexpected silver linings of being back here so soon is that Charlie is now off oxygen. Since he was connected to all the monitors again, the nurses turned off his low-flow oxygen on Saturday morning to see how he’d do and he’s been off it ever since. The biggest drag of his current status is that he has to spend most of the time on his back in his crib so that his EVD doesn’t fall out or dump too much fluid. The stamina we need is almost harder the second time around even though we know this will be a much shorter stay. At least we still had our September parking passes for Cedars. Maybe Charlie just wanted to be in air conditioning again since it started to heat up significantly in L.A. the day he was re-admitted.

If anyone has the right to sing the blues, it’s our 21-week-old son (with a corrected age of six weeks) who is going on Major Surgery #6 and has shown amazing strength in all he has survived and endured. And yet he ain’t singin’ the blues at all. You’d be hard pressed to find a more good-natured little baby who seems to accept all that life gives him without so much as a grimace. What a teacher and role model he is.

Comments

[Cynthia Reich]

The kid looks absolutely ecstatic . . . and beautiful. Would that you and Kendall could be so ecstatic. (You're both beautiful, of course.) There's gotta be a good place for that fluid to go -- c'mon doctors!

[Sheila Linderman]

An excellent excuse for missing HHD services! Charlie's on our mishebeirach list, of course.
G'mar tov,
Alan and Sheila

[Leah]

Spencer did a great job reading Torah on Rosh Hashanah. I'm always thinking of you guys and hope these surgeries go smoothly.

[Julie Levin Freireich]

I'm just thinki' he looks a bit like Spencer? I dunno. Wishes for a happy HEALTHY year to you all. Love, Julie

[Michele]

He's beautiful. They'll get it all fixed up in no time -- here's to it.

[Julie Levin Freireich]

"Ditto" on what Sheild said, now that I looked it up!

[Jane]

I am so in love with your little man, and think about him and you guys every day. I am praying that his surgeries go well, and that within a couple of months he won't need a shunt -- or any more medical intervention.

[Maria Sosa]

Danny those pictures are so sweet. He's just the dearest little guy. I'm thinking about you all the time.

[A]

That's a very Dalai Lama-type grin he's flashing...

[Margie]

What a baby! The best of the human spirit in his sweet little face.

[Lori Kirkland Baker]

He's so CUTE and alert. I hope his surgery goes well and they're able to place the shunt in the "good" place.
You are always in my thoughts.

[jill]

we are with you and loving you all....

[david]

Love that kid already.

[peter]

danny you the bomb

[Kitty]

That last picture of him is priceless. What a good-natured baby.

[Ana]

that last picture of him is so cute!!

[Edelweiss Transplanted]

Oh my gosh, that little smile and wink in the last photo is the most adorable thing!

Very you and very Kendall -- even at 21 weeks.

[Helena]

shana punim!

[mary]

he gets cuter with day! hoping and praying everything goes smoothly and that you all will be back home soon! stay strong!

[Sue Katz]

Danny, thanks for this generosity - letting us into your lives.

[Kerry]

Enough already... get home Charlie... I have gifts! Love, your impatient Aunt Kerry

[amba]

Oh, God, he's winking. He looks so good, Danny, in spite of everything!

[Beth]

Such sweet pictures. His personality shines through, esp. in the 2nd one. What a trooper he is -- you all are troopers! Thinking of all of you. Big xoxox to the little guy!

[La Framéricaine]

Petit gars... Quel gentil sourire.

If this shit keeps up, Charlie may just bump the Teflon Don right off his title! In fact, I'm just gonna go ahead and do it for him.

"Little buddy, I hereby dub you, Teflon Charlie! You may now rise and eat chocolate cake and ice cream to your heart's content! With "black cow" Coke floats, if you so desire!

[jeff]

That's a bummer that you're back in the hospital. I guess you're still on that proverbial roller coaster ride, although if Charlie is in good spirits that's all that really matters. Isn't it?

[Pam G]

Hope Charlie continues to do OK. His pictures are adorable. Stay strong!

[Amy]

I will continue to keep you, your family and of course your sweet boy in my thoughts. That last picture is wonderful... I want to squish those chubby cheeks!

[layla]

man!!!!! he is a doll...ok daddy-o where is the address my large clan can send him a little present. He is sooooo stinkin cute!

[Candi]

It's amazing how resilient kids can be! I've said it before, but I'll say it again - thank you for sharing your story. My son has a minor surgery coming up next month and I worry about it...but Charlie puts so much in perspective. And what a sweet smile!

[Sally]

What a little doll - he is so cute! I LOVE the shot of his smile! Hoping that the doctors can find a good spot that doesn't involve the heart or lungs and that you guys can all go home soon! Sending love and positive thoughts your way!

[Elaine Soloway]

Oy such a punim. Charlie's cheek will be prime territory for pinching once he blows the joint.

Prayers and love continue...

Fake Grandma

[sandy]

Danny~

Chalie is amazing~as you say too~ he's a wonderful teacher and role model. Often we must work with the pieces that are given to us!

Love~lo-he-ha~
sandy

[Julie R.]

I agree with everyone--Charlie is so precious. That wink is hilarious!

Whenever I have an ache or pain, I think of how much Charlie has tolerated without complaint, and it humbles me.

I hope all the medical stuff happens as quickly and easily as possible.

Love,
Julie

[Chris]

I've been out of town for a few days and just read your three latest posts. Shoot! Glad to know Charlie's hanging in there and I LOVE seeing that precious smile. He IS a role model. We continue to pray for "little Charlie Miller" [what my son Duke says nightly]. Thoughts, prayers and peaceful juju flow from our home to Charlie Miller and family!

[RD]

What beautiful pictures of such a sweet baby. Thinking of you all as you deal with the day to day stuff. Be well, Charlie!

[Heather]

Look at that smile! He's such a charmer. Kisses, little Charlie. We're all hoping you'll be back in your own home soon.

[Juliane]

Life is a precious gift from God! Life is
something so sacred and should be protected and cherished at all costs! Your little boy
is so adorable. What an absolute blessing
and joy that he must be to your family.