If It Walks Like a Duck

Charlie had his VP shunt surgery this morning and is now resting comfortably, still groggy from the anesthesia but extubated again, thank God. It’s funny up here in the PICU (and in the NICU, for that matter). You get so used to your own child’s issues that it’s easy to feel sorry for the other kids facing stuff that you’re less familiar with. You constantly think, “oh, that poor kid and those poor parents, how can they endure that? We are so lucky!” Meanwhile, the other parents are thinking the exact same thing about you.  Isn’t that largely what so-called “strength” is during times of strife? When something is happening to your loved one, you just deal with it, you don’t have any choice. And before you know it, whatever you’re dealing with becomes part of your new “normal.” If I had been contacted by a psychic last December who had given me a list of everything that was ahead for us in 2009, I would have been horrified and terror-stricken and certainly would not have wanted Kendall to get pregnant. Thank God we don’t have the ability to see into the future. As hard as it was, I am so very grateful for everything that has brought this wonderful boy into our lives. But would we have willingly proceeded if we knew we were imminently facing the loss of one child and the life-threatening status of another that included five months in intensive care and six major surgeries?

The latest surgery went very well, thanks to the expertise of our neurosurgeon, Dr. Danielpour and his associates. Charlie’s other surgeon, Dr. Frykman, found a place lower in his peritoneal cavity to place the end of the shunt’s catheter so it would be clear of scar tissue. It took a little while to get Charlie off the ventilator but he’s off it now and breathing easy. Of course a million things could happen that could make the new shunt malfunction and land us back here but what can we do but live in the moment and hope for the best? Once we leave Cedars I don’t plan on being back any time soon but if we have to eventually return for more revisions, so be it. In addition to my endless gratitude for the surgeons’ and the PICU staff’s medical expertise, I remain in awe of Charlie’s will and spirit. His stamina and strength continue to inspire me as he cheerfully endures more than most people have to face in a lifetime. The above photo was taken just prior to surgery, when Charlie was hugging his duck Linda, a gift from the NICU parent organization. We continue to get visitors from downstairs and have now added the PICU doctors and nurses to our list of heroes.

The best news is that Charlie no longer has any external tubes draining fluid from his brain. This means we can hold him again as soon as the anesthesia wears off. And that is definitely something to be grateful for! 

Comments

[Erin Murphy]

God bless you and Kendall and Charlie. Here's to Charlie coming home for good!!

[Heather P.]

Your family and precious boy are in my prayers every night and will stay there as long as you need them! G-d Bless!

[Helena]

Charlie sure has the right stuff--he is one tough cookie. Can't wait to visit him at home!!!

[Laurie]

Thank you so much for the update. I have been praying and will continue to pray. Much love.

[Campbell]

The strongest most amazing baby ever... He's something special for sure.

[Brett Hickman]

I've been out of the loop - when I last left you all he was back and it was all celebratory. We're pulling for all of you here at the Hickman household.

[Julie R.]

I'm so happy the surgery went well today, and I hope you're all home again very soon.

Love,
Julie

[Gordon]

Dear Danny,

"Heroes" is definitely the right word to describe all the miracle workers with which our little Charlie has been blessed. I am constantly in awe of how that kid can handle all the invasive procedures that are being done to him on a regular basis. He's stronger than most adults. And, he takes it all with a smile ! Love the duck...

Gordon

[Edelweiss Transplanted]

I dearly hope that you are holding him already while you read this. Every time you post, I think, "There can't possibly ever be a cuter photo than this one," and yet, there always IS! Kiss your little sweetie for all his fans.

[Michele]

When you look at it that way, Danny, there's a gift around every corner. Thank you for being so frank about your journey. I'm very inspired.

[Lori Kirkland Baker]

Oh he looks so SWEET with his duckie.
I'm glad the surgery went well and is behind him.
Lots of healing hugs to you, Charlie.

xo
Lori

[sandy]

Danny~
Charlie has the most incredible expression next to his yellow duck~ He truly lives in the moment and just breathes.

I am so happy for Charlie's successful surgery~
You are all in my thoughts and prayers.

Love~ lo-he-ha~
sandy

[Marilyn Molnar]

So happy the surgery went well for Charlie. What a little trooper you've got. Hope you have him home soon, duck and all.

Love,
Marilyn

[amba]

Good, good!!

[anita]

Beautiful boy. These little preemies really are special. I was never religious but the certainty that my daughter was too good to be true and must be an angel has definitely brought me closer to god (though now that she's 8 going on teen I need to remind myself now and then). Charlie sounds like a true gift and I'm so happy to hear that he's back on track and doing so well!
Anita

[Pam G]

Good news and another cute picture. You all remain in the thoughts of everyone here.

[Maria Sosa]

Oh wow, I just love this little baby so much!!! I can't imagine how much you have been wanting to hold and cuddle him because just from the photos I want to so much!!!

[Tom Troupe]

Danny...good news, Danny...we were with Betsy the other night..you & Kendall are in our thughts..we love looking at Charlie's beautiful face!....Carole & Tom

[Elise]

So glad to hear the surgery went well, thank G-d. What a little trooper that Charlie is! That's a very special little guy you have there! (But of course you already know that!)

[Kirk]

Glad the surgery went well. Charlie's very photogenic.

[Rebecca]

What a gorgeous little man! Of course, I don't know you, but your story has moved me. Our 15 month old daughter had to undergo hip surgery in March 2009 and I thought that was traumatic, but man, that is nothing compared to you and your family. I am so grateful that you are sharing your story, it has enriched my life. Thank you, and when I am fasting on Monday, I will have Charlie in my heart.

[Leightongirl]

Go Charlie!

[Emily Barton]

Charlie looks an awful lot like his dad in this picture (and, yes, I'm looking at Charlie, not the duck, although the duck is awfully cute).

[Sue Beauregard]

Dearest Danny, You and Kendall are my heros. Bless you and Charlie always.
Love

[Jane]

For all the pain Charlie has gone through he has such a great disposition. I think he will be a naturally happy person.

I lit a candle for Oliver today, and said extra prayers for Charlie, you, and Kendall.

[churlita]

I agree. Thank god we can't look into the future and see what it holds for us, or I'd be creating horrible scenarios in my head all day long.

That top pic of Charlie is so adorable. I'm sure he's worth anything you'll have to go through for him.

[Jane Gassner]

Dr. Danielpour? He was my doctor when I was a Cedars. Every morning he'd come in, ask to to smile and raise my hands. Then he'd nod wisely and go away till the next day. I thought of him was I was reading about Charlie's external shunt, because Dr. D. was the one who blithely said to me one day, "this thing has been in long enough" and pulled it out. The thing about those docs at CSMC Neurosurgery is that they are very very calm. Maybe all that messing in people's brains makes them imperturbable.

[creatin]

When I am constantly in awe of how that kid can handle all the invasive procedures that are being done to him on a regular basis.