Return to Cedars

I can’t tell you how touched we were to receive so many beautiful comments about Charlie’s return home. The past week has been utterly joyful, one of the happiest weeks of my life. It seemed almost impossible that we weren’t going to the hospital every day as we had for so long. But guess what? We’re baaaaaaaaack. Crap.

Starting last weekend, we noticed that Charlie’s VP shunt seemed larger than it had in the NICU. Were we imagining things? Was his head just changing shape a little bit? Was it because we were seeing him in sunlight for the first time instead of the fluorescent hues of Cedars-Sinai? We knew that infections are always a risk with VP shunts but Charlie had none of the signs—no fever, no change in behavior, no trouble eating or sleeping, and no puking. You couldn’t find a more delightful, happy baby. But by Monday morning, even I had to admit that the back of Charlie’s head was starting to resemble the anatomy of a Ferengi from “Star Trek.” I got an appointment with our neurosurgeon this morning so he could take a look. Kendall and I both fully anticipated that he would tell us that everything was cool and to take Charlie home. We were so sure we’d be back by his next feeding that we didn’t even take any extra formula. Instead, after examining him, the doctor sent us to the emergency room where our son had to have x-rays, CT scans, ultrasounds, and cerebral spinal fluid taps. Turns out his shunt is not working properly, damn it, and the fluid is leaking into his head, creating that Ferengi effect. Before we knew it, after only five full days with no hospital visits, the familiar wrist bands were slapped on the three of us and Charlie was re-admitted. This time we’re in the PICU (Pediatric Intensive Care Unit) instead of the NICU. Sigh.

Charlie will have his fifth operation tomorrow morning but we’re not yet quite sure what that will be. It’s possible that they will only have to enter through the abdomen to change the location of the catheter that is depositing the fluid in his peritoneal cavity. If that were to happen we could be home fairly soon. But a more likely scenario is that they’re going to have to remove the entire shunt and replace it with a temporary spigot (I forgot the scientific name) that automatically diverts the fluid out of his head into some kind of external apparatus. Then we’ll have to go through a full round of antibiotics to clear any infection (around 10 days), followed by another surgery to place a new VP shunt. I’ll provide an update when I know more but I just wanted to inform you what was going on so you can keep Charlie on those prayer lists a little while longer.

It’s a major drag, of course, but if we got through 137 days in the NICU, I suppose we can get through a few more weeks in the PICU. Our old social worker and several of our beloved NICU nurses came up to see Charlie, shocked that he was back so soon and delighted by how well he seemed to be doing otherwise. I thought I’d be in our synagogue tomorrow night welcoming in the year 5770, but instead I’ll be waiting for the surgical shofar to blow at our well known stomping grounds. Happy New Year to all of you. I know it will a happy year for us…as soon as we get our boy home again. 

Comments

[sandy martin]

Danny~

My prayers are always with Charlie and all of you. I feel your pain and concerns very deeply. Charlie has such a good medical team ~ you can count on them to do the best for him.

Thanks for taking the time to share with us.

Love~lo-he-ha,
sandy

[john armstrong]

Drats! Well, hopefully this is just a bump in the road and he'll be back home soon. Maybe he has a touch of his father's side, just when you relax and think everything is fine...Bam! He really is in great hands and the upside is he is getting absolute attention 24-7 which is what he needs right now. Can't wait to hear that he's home to stay and we're sure he will be soon. You all are in our thoughts and prayers.

[Judy G]

Oh Danny.....what a setback. I was thinking about all of you and how you were home for the new year and what a wonderful blessing that is. I will pray that everything goes well and you are all home for Yom Kippur (or sooner).

I am so glad though that you had such a joyful week with Charlie home.
It will be that way again soon.

My prayers and thoughts are with all of you always.

[Dr. Judy]

Well shit. This wasn't supposed to happen. Good luck with the surgery and I hope that your hospital stay is a short one. I'll be thinking of you. The spigot is called an extraventricular drain (EVD). And I am optimistic that he wont need it. My bet is a VP shunt malfunction, not an infection! Just a quick plumbing repair...

xxoo
Judy

[Adriana Bliss]

Oh dear, I'll be thinking of you tomorrow. Sending my prayers your way.

[Catherine W]

Oh no. I can't say it better than you. Crap. Will be hoping and praying that this PICU stay is short and smooth and that Charlie is home soon. Minus Ferengi head.

Will be thinking of Charlie tomorrow, I'm so saddened that he has landed up back in hospital. But perhaps now he has had a taste of the good life at home he will be even more determined to bust back out of there.

[La Framéricaine]

One minute at a time, babies.

I swear to gawd it's a test they make up for us to see how much we can take. I just happy that you know all the team members, have a lot of support, and aren't new to the routine. Try to take a little bit of comfort in that as you work this knot out.

How well I know that chart. Whenever we have pain conversations it's always out touchstone!

Amitiés

[margalit]

Awww Danny, that sucks. But it's better to have found it and get it fixed now rather than in the middle of Rosh Hashana. Shana Tovah, btw. I apologize profusely for being so quiet these past few weeks, but we've been having our own tsuris with my yeled gadol and it's been horrible, so I'm really the wrong person to be kvelling right now. But I think of you and Charlie, who has the same Hebrew name as my son, all the time. I just wish I could be cheerier.

[Pam G]

Sorry to hear about this. You'll all remain in my thoughts. Best for the new year! It is sure to get better.

[sweetsalty kate]

Oh, Danny.

A few more weeks. It's a setback but now you (and Charlie) have a taste for fresh air. You'll get it again.

Thinking of all of you constantly.
xo

[Otir]

It hurts.

I am just leaving a comment, otherwise how would you know that I visited as every post, and am trying to carry you in my thoughts always. Charlie and his beloved family will be in our mi sheberach.

[Elaine Soloway]

Three steps forward, one step back. That's life, unfortunately. But we do manage to inch ahead, however slowly.

Prayers that Charlie rebounds and soon gets back to his cozy home nest.

xoxo
Fake Grandma

[Margie]

Will be praying extra hard for you all with the happiness and love you've shared.

[Jan]

We're here on your blog and you're here in our hearts.

[Julie R.]

I'm so sorry Charlie's back in the hospital, but I'm glad you had a good week. Here's hoping you can return to domestic bliss asap. I'm sending positive thoughts.

Love,
Julie

[david]

He's a fighter. He'll win this round, too. A happy and **healthy** year to you all, from us all.

[Alan Goldkin]

Danny, so sorry for the set-back, but we pray that it's minor. I've never dropped Chuck Miller from my prayers, and the rest of you, too. Amy, Yaffa, Zahara, Nadav, Rafael, Margalit and I wish you all a year of nothing but joy, sweetness, and peace and HEALTH. We are all looking forward to meeting our little cousin and our bigger cousins someday soon.
L'shana tovah, Alan

[Erica M]

How wonderful for Charlie to have such vigilant parents. Some would have dismissed those signs of trouble altogether. Peace be with you as you prepare for Charlie's next homecoming.

[Lisa D]

What a drag! I remember knowing that the statistics said that Macey would need a shunt revision, but feeling so bummed when it actually happened. Hopefully you are just getting it out of the way and things will be smooth sailing from here on out. Best of luck with the surgery and your stay in the PICU!

[V-Grrrl at Compost Studios]

Oh Danny. Thinking of you...

[churlita]

I'm so sorry. I hope it all goes well and Charlie gets to go back home soon.

[Amy]

I am so sorry he is back in the hospital. Sweet wee boy. I will keep you all in my thoughts.

[Lori Kirkland Baker]

Damn rollercoaster. I know how ready you are to get off this ride.
I hope Charlie's surgery goes well and he's soon back home.

Shana Tova

[Judy]

l'shana Tova!
As my family is getting ready to go to our Little Spring Glen NY shul, I had to check your blog. Will pray for charlie and your family.
I suppose he's in recovery by now and all will be well.
love

Judy

[Voix]

Prayers from Minnesota heading your way.

[Marilyn Molnar]

I pray that he/she watches over Charlie and sends him home to his loving family quickly. I hope my prayers count even though they are not done in shul but in my heart at home.

L'shana tova.

Marilyn

[Ginger]

I hope that everything goes well for Charlie. Your family is in my thoughts and prayers.

[Alan Schiff]

Danny:

Charlie is the most couragous person I know. You and Kendall come-in a close second. All of you are in our prayers.

Love,
Alan

[Jane]

L'Shana Tova, and extra prayers for Charlie.

[Jen]

Damn evil eye! We will be keeping the entire family in our thoughts this weekend!

[OldOldLady Of The Hills]

Dear Ones...So sorry to read this news...And prayers are coming your way right now...! I hope ALL is going well today....And that the operation to correct this situation has taken place and that Charlie is in "recovery"....You all have been through so much, Danny....I pray that dear little Charlie will come through this with flying colors.
And a Very Happy New Year To You All, Too my dears....(((((((HUGS))))))) All Around....!

[Gordon]

He's a real fighter. Nothing keeps him down for long. Good signs. Happy New Year to you all.

[debbie rose galo]

danny
wow thought this was going to be a happy healthy prosperous new year post for you and your family and the amazing charlie. so sorry to hear about the setback. was sooo happy that he was home. well my thoughts and prayers are with you and looking forward for all to have a healthy happy and prosperous new year.
lshana tovah

[Emily Barton]

Oh, this is JUST not fair!! Our prayers still with you. oxox Emily

[Karen]

Danny! Sending love and blessings!

[mary]

hoping and praying for a quick return home!

[amba]

Oh, I'm so sorry. Sorry above all that Charlie has to endure more surgery. I hope, hope, hope they only have to reposition the outlet. But there's been something fishy about that damn shunt from the get-go.

You sound fortified by the week at home with him. You and he have my prayers among so many others. May you all be back home together soon.

[quinn cummings]

I'll light a candle for that sweet boy this weekend.

[Edelweiss Transplanted]

Well, damn. This isn't fair. Many prayers for Charlie and a successful surgery tomorrow coming from out here in the East.

[Caren Jones]

Happy and healthy new year to all of you. May the new year bring Charlie and your entire family good health.

[Cynthia Reich]

Dear Danny,

My niece, Debbie, is going to put in a good word for little Chaim at temple tomorrow. Agnostic that I am, I'm knocking on wood & spitting.

Love,
Cynthia

[Kitty]

Oh, dear, how disappointing... but a lot of us are sending positive vibes your way, and hopefully Charlie will be home soon for good!