Shunt Shmunt

Roller coaster? Meet Charlie’s VP shunt. How do you do? Not so well, actually. By way of inconclusive update, something is going on with Charlie’s new shunt, part of it is not working properly and he’s being subjected to a battery of blood tests, taps, and other procedures to try and figure out what’s happening. The main fear is that he has an infection which would mean the entire shunt would have to be removed from his body as soon as possible (he already has a slot for surgery tomorrow just in case) but preliminary white blood cell counts and the early cultures for the cerebrospinal fluid they tapped yesterday and today do not show a definite infection, nor does today’s head ultrasound. The part of the shunt that’s in his brain seems to be functioning okay, it’s the part that’s supposed to bring the fluid into his peritoneal cavity that is not working “optimally,” there’s some kind of backup or blockage. At the very least, it sounds like they’ll have to go in there and monkey with the tubing but if there’s the slightest sign of infection tomorrow or the day after they’ll have to take everything out, put the reservoir back in and wait WEEKS to try the surgery again. Sigh. So much for my fantasy of Charlie coming home for my 50th birthday (September 4).

I really try not to engage in negative “what-ifs” here but that’s the story for the moment. And poor Charlie has been completely sedated since Wednesday morning so he hasn’t been eating and has only rarely opened his eyes. Or maybe I should say lucky Charlie, given all that’s going on—I’d kill for a morphine drip! Thank God tomorrow is Monday and all the maven surgeons will be back and will be making decisions about the best next steps.

Until then, here is the song that I've been singing to Charlie and to myself all day long. It's what we've had to have for the past 112 days and what we continue to need:

   

Comments

[Edelweiss Transplanted]

Oh dear. Sweet Charlie. I'm redoubling my prayers that the roller coaster will turn into a smooth ride on a track as smooth and flat as a Kansas prairie.

And as a parent, I know you and Kendall are the ones that really could use the morphine drip right now. Hope that no more is required for ANY of you very, very soon.

[maggie may]

Damnit. I'm sorry. Here's to hoping it rights itself without intervention.

[Kitty]

Oh, hell. Sending all my white light and positive thoughts to Charlie, with a little set aside for you and Kendall.

[Annika]

Oh, Danny. I can only imagine how much the setbacks hurt. Hoping for good news for you.

[Cynthia Reich]

Oh, Danny!

Love,
Cynthia

[Beth]

I'm sorry to hear this recent news. Hopefully you'll have a better idea of what's going on tomorrow and a plan will be put in place. The uncertainty of not knowing what's going on is so difficult.

Keeping you all in my thoughts & prayers.

[Adriana Bliss]

Just thinking of you - I cannot imagine the difficulty. I'm praying for the good stuff.

[Neil]

Sh*t. With you, as always.

[Alexis]

Ugh. Danny.

Big prayers. Headed your way with lots of light and love.
We're here. Always.
xo

[Catherine W]

Oh no. As has already been said, damnit.
I'm so terribly sorry. That darn rollercoaster just keeps on and on.

Hoping and praying that a little bit of monkeying with the tubing will do the trick and that there is no infection.

[Pam G]

Good luck this week. You're all in my thoughts.

[Cousin Scott]

I hope that you get good news this week. You are in my thoughts and prayers.

[churlita]

I've been thinking about you guys a lot lately. I hope everything goes well and that Charlie's shunt starts doing what it's supposed to. My thoughts are with you, as ever.

[sweetsalty kate]

I would do anything to set up a parental drip of some kind of psychadelic substance that would make all this disappear for you both, and bring that boy home, and erase the memory of this blessed, blasted place.

I'm working on it. In the meantime, sleep your way through it Charlie, and wake up with some light up ahead.
xo

[quinn cummings]

We're sending our love.

QDA

[Julie Schreiber]

Sending Charlie LOVE and positive thoughts. Thinking of you all and wishing for only good things. xoxo Much love...Julie

[Julie]

Keep strong, little man! Sending my prayers to all of you.

[V-Grrrl at Compost Studios]

Oh another week with your heart in the furnace...

I understand those shunts can be tricky, so I hope it's just a manner of a minor adjustment and not an infection.

Hang in there, Danny.

[CurlyQ218]

I just heard about this site a two weeks ago and I am in awe of how honest and blunt you have been with your readers.Sometimes life is very UNpretty, depressing, and just plain awful for a while.I can't imagine what I would do if I was in your place. I would hope I had the courage that you show here, everytime you write. I'm glad you have this outlet and I'm glad you get so much support. I hope and pray that all this will be over for you all soon and that Charlie will be healthy and have a good life, knowing how much he is loved by his family.

[therapydoc]

Hope he has a complete and speedy recovery. Oy.

[Sally]

So sorry to hear about the latest bump (or mountain) in the road. Hoping you had good news today and that the road will be smoother this week. Thinking of you.

[mary]

Well this just sucks! I really hope you had better news today. You all must be exhausted so much up down... Little Charlie is in my thoughts and prayers, as are the rest of your family.

[Mia & Gabe Marano]

I was just catching up on the news and I was so excited to see chubby Charlie at 6lbs 3 oz but really bummed out about his shunt setbacks. Can't this little guy catch a break? And you the parents? I can't tell you how much we wish this nightmare end and that you get to bring little Charlie home - and he will soon, I'm sure of it.
All our thoughts and prayers,
Mia, Gabe and Jonah

[Lori Kirkland Baker]

Shit.
I hope it's not an infection, dear boy.
Many prayers.
Always,
Lori

[Elaine Soloway]

Danny,
Does it ever feel crowded with all of your followers leaning over your shoulder and continuously peering into Charlie's bed? We're not there in human form, but our spirits and wishes are stuffing the place. You are not alone! I'll move out now, and let someone else take my place. Did you feel my kiss on your cheek?

xoxo
Fake Grandma

[gorillabuns]

it is interesting who one writes down things as not to remember the oddities of what is occurring in their life.

i totally understand.

[Robin Najar]

Danny,
I've been reading your blog about your boys and your journey on this rocky road since you found out Kendall was pregnant. I'm finally outing myself as a reader.. My thoughts and prayers have been with you all along.. Charlie is such a trooper. I hope that this will be just another bump and he'll climb over it just as he has all the others. I know you will be with him every step.. Know that we are all pulling for you and your family..
Be Strong...

[Maria Sosa]

Oh darn, hope its not an infection. All my love to all of you, especially Charlie.

[Jane]

The guy who put in my shunt reminded me the last time I saw him: "They're just plumbing and sometimes plumbing gets stopped up."

[Kimberley]

Fingers, toes, arms, legs etc all crossed that this goes well. All the very very best, K

[Leightongirl]

I am thinking of you, as always.

[Julie R.]

Danny and Kendall
I'm a couple of days late in responding, so I hope something good has happened. Thinking of you always.

By the way, I couldn't play the song. What is it?

Love,
Julie

[Elise]

Darn it. I was hoping & praying that the surgery and shunt would go smoothly for little Charlie. I think of you guys every day, and wish for you that the rollercoaster ride you have been on will stop "rolling" and start "coasting!" No more ups and downs, just a smooth ride. I so hope today was a better day and that Charlie got some good news and that there was not an infection after all. My prayers are with you & your family, you guys are so deserving of some peace of mind and carefree joy.

Best wishes Danny,
Elise