Surgery Update

Yay, all of Charlie’s internal organs are now internal again! He had his “ostomy take-down” yesterday and all went well. I think the pediatric surgeon that did both of these surgeries, Dr. Frykman, is a genius. I am so thrilled to say good-bye to that damn ostomy bag that kept falling off and causing all sorts of problems over the last two months. I remember when Charlie had the initial emergency surgery in the middle of the night to remove the perforation in his colon. I was still operating on pure adrenalin, Kendall was still at the mental health facility at Cedars, and our son was still well under two pounds. The idea of doing such a delicate operation on so tiny a baby was terrifying. When Dr. Frykman told us back then that he’d have to wait until Charlie reached two kilos (4.6 lbs.) to put his intestines back together it seemed like that day would never arrive. But here we are, thank God. 

It will take Charlie a while to recover from the surgery and for his digestive tract to kick into gear but this is a major step on his road to coming home. Once he is completely healed he will be able to get what we hope will be his last surgery—replacing the reservoir in his head with a permanent shunt that will carry the excess cerebrospinal fluid to his stomach. It’s funny—even reading that sentence three months ago would have made me woozy and now I spit out medical terms all day like I’m a featured player on “ER.” I used to turn away during most of Charlie’s procedures but now I’m right there, holding his head when they tap his reservoir and extract the yellow fluid from his brain. Say what you want about the medical system in this country, I am filled with endless gratitude for the incredible expertise I see every hour of every day and for the literally hundreds of individuals who have been saving my son’s life over and over again for the past 78 days.

Charlie is still a bit out of it thanks to the morphine he’s getting every four hours. When I asked the nurse last night if I could have some she said I’d have to take every single preemie-size dose they have to even feel a slight buzz. Don’t worry, I was only kidding. I may be majorly stressed out these days but I have no plans to break into the NICU narcotics closet! Charlie is intubated again from the surgery but hopefully the breathing tube will come out today or tomorrow and he’ll go back to his nasal cannulas.

Tomorrow Charlie turns 36 weeks, gestationally. That’s considered full-term for twins and it’s what we were  aiming for even though his official due date was August 12. Part of me still daydreams about the parallel universe where Kendall and I happily go to Cedars this week and welcome our two healthy boys. But that’s not where we are. Even after 11 weeks I still feel like I’m just beginning to come to, to take my place in the world around me. I’m not there yet since our lives are still based in the hospital and will be for some time to come, but I’m getting occasional jolts of real-world awareness. Some of those are not exactly pleasant since they bring panicked feelings about work, money, and all the other things I’ve pushed aside since the end of April. But fuck it, everything we’re doing now is more important and there will be time enough to resume all previous activities. If I’ve neglected to thank anyone personally for their amazing acts of kindness, if I haven’t responded to phone calls or emails, please forgive me, I will eventually catch up on all correspondence. For now just know how grateful we are for all thoughts and prayers sent our way.

Comments

[Alexa]

Yeah!!! Y'all have reached an important milestone. One of my preemie twins had an ostomy bag as well and I hated it! She calls the lingering scars her "war wounds" and is happy to show them off.

[Jane]

Yay to poopy diapers! Isn't it amazing the simple things that you & Kendall have to look forward to?

I don't understand the fluid and shunt...is he expected to have excess fluid for a long time?

[Cynthia Reich]

Dear Danny,

Thanks for posting the good news so promptly. Now I don't have to bother you with phone calls and e-mails.

I absolutely volunteer to change as many poopy diapers as Charlie can produce.

Love and hugs,

Cynthia

[Pam G]

Thanks for the good news! May the rest of the week be good as well.

[Yakira Heistand]

Keinahora poo poo poo

Such amazing news.

Yakira

[quinn cummings]

Keep going, Charlie. It's not a far ways to home from here.

[Margie]

I keep thinking of that tired saying--'when the going gets tough......' Such a deep reservoir of love and strength you are showing you have--well I'm not surprised but still, you never know till you need it. Yay Charlie!

[jackie persson]

You guys amaze me with your strength.

[Diana]

I have been saying lots of prayers and thinking about all of you - I am so happy that all went well. Yeah Charlie!

[Pearl]

Refuah shlema, Charlie. May you have a complete and speedy recovery from this surgery.

[Jeff]

Hooray! I'm so glad the surgery went well!

[Ana]

Yes!!!!

[Elaine Soloway]

Ahhhh...

Fake Grandma

[Pam P.]

Thanks for the update, Danny! I was thinking about him all day yesterday... so happy it went well!

[Julie R.]

Danny,
I'm so glad about the positive outcome. I'm wishing for a speedy recovery.

Love,
Julie

[tamarika]

What a journey ... what a ride ... thank you for keeping us involved and informed about these amazing stages in Charlie's - and all your lives. My best wishes and many, many thoughts go with all of you - constantly.

[judy frank]

another grateful reader..may our prayers continue for added strength to you Danny, and your family. We're with you praying, and sending love your way.

[Heather P.]

G-d Bless Danny! I pray for your precious baby boy and family nightly.

[gorillabuns]

you know i'm rooting for you guys and charlie and totally crying while i read this. for some reason, this post is more heartbreaking to me right now than some of the others or maybe, i'm just totally losing it myself.

never apologize for putting your family first with regards to returning phone call and emails. everyone really understands.

[Lori Kirkland Baker]

Yay Charlie!!
I'm so glad you've got your stuff back where it belongs and I'm wishing you a speedy recovery.

Always cheering you on, little guy...

XOXO
Lori

[maggie may]

What awesome news!! Great news:) I have a friend who has that shunt too- she's 34 and has had it replaced before but has done great with it.

[V-Grrrl at Compost Studios]

Applause in Virginia.

[Helena Seli]

Dear Danny. I just got your blog site from Felicia Park-Rogers (our sons go to the same school). We had our baby daughter Annalisa at 25 weeks and 4 days at UCLA on June 14. She is now just about in her 30s (weeks, that is). Wow, can I relate to you. Would love to connect further if at all possible. I finally do not feel alone in this experience.
Sending lots of healing to Charlie - and to you all. Lots of love,
Helena Seli

[La Framéricaine]

Danny,

I'm glad to hear that Charlie has had a successful surgery and that both his gestational age and his weight are where they should be.

I wish him a quick recovery from the surgery and continued improvement in his overall health so that he can soon go home with the rest of your family.

Just take it one day at a time. "Medical time" is an alternate universe all its own and I've visited there a few times myself with loved ones, as well as alone. It takes nerves of steel and a grand capacity to take your pleasures where you find them and constantly "reframe" everything.

You are all in my thoughts daily.

Amitiés et bon courage,

[K Wild]

So happy to hear that all went well with the surgery. Your posts are great - they are so life-affirming. Charlie is often in my thoughts - best wishes to you and him.

[john armstrong]

Your blogs have become an important part of our lives. If prayers, crossed fingers, hopes and dreams have any meaning at all,
Charlie should be feeling better real soon. Our hope is that someday you all will be able to look back at this like a distant dream. Hang in there, you're in our thoughts and prayers.

[Elise]

Thank you once again Danny for the update on little Charlie. I am smiling a big smile right now, knowing this surgery is finally behind him. Now I wish your precious boy a smooth and speedy recovery. I am so glad Charlie is a big step closer, G-d willing, to being able to go home with his loving family.

[Anne]

I'm so glad to hear the surgery went well and hope and pray he continues to grow stronger each day.

[churlita]

That's great. I'm so glad you guys are finally at this point.

I was just talking to a friend of mine who's 3 yr old has cancer, and he was saying a lot of the same things. He had no idea anything had happened in Honduras because he had been living in hospital world the last few weeks.

[Gordon]

Dear Danny,

Another day, another miracle...

Don't worry about money. You're a great story teller. I've told you all along that all you have to do is to organize your entire blog as a book and it will be a best seller. And, now with the gripping drama of the "Charlie's Great Adventure" chapter, there might even be book awards.

Gordon

[Sarah]

SO GLAD to hear that the surgery went well! Fantastic!

And do NOT apologize for not getting back to everyone who has written to you. I can assure you that nobody is thinking, "What an asshole! He didn't even bother to write back! It's not like he's preoccupied or anything..." ;)

[Catherine]

That is brilliant, reaching that 36 week milestone. I'm glad that Charlie's surgery went well too. The reintubation must have been awful, I hope he'll soon be back on the nasal canula.

My 23 week surviving twin came home at 42 weeks gestation (those last two weeks felt the longest of her whole NICU stay). She came home at the tail end of last year. I still have the odd glimpse into that parallel universe of healthy twins, I still feel like I'm coming to, I still have those awful flashbacks. Your writing is so eloquent, it brings it all back.

Hope that little Charlie beats my girl hands down and makes it home at 40 weeks max! xx

[Kimberley]

Yey for Charlie! K xx

[amba]

Oh, Charlie! God bless you!!!

[Marilyn Molnar]

Hi Danny,

Great seeing you and Kendall tonight .....

[Dr. Judy]

Great news Danny, and good bye ostomy bag!! All the best to your family.

[Toby Bornstein]

Dear Danny,

God bless you for being who you are and sharing the wonderful news about Charlie. He is truly a miracle baby and you and Kendall are miracle parents.

Toby

[Wendi Goodman]

Take it from me, Danny, morphine isn't all that it's cracked up to be. I'm a chronic pain patient. I take 90mgs of extended release morphine every day just to dull the pain in my body enough so that I can get out of bed. I realize your comments were a joke, but I'd give up every last dose of morphine for one day of a pain free life. I'm not "high" on my meds, but I can no longer drive because of them. The loss of independence this has created is more tortuous than you can imagine.

Trust me, this is one monkey you don't want on your back.

I will be in Cali in September and I am planning to meet Zsa Zsa for lunch or dinner while I am there. I hope that you can get away for a few hours to join us.

Much love to you and your family, my old friend,

Wendi

[Rose mann cherney]

Danny and Kendall
Eddie and are are happy to hear of Charlie's successful surgery.
we are looking forward to meeting him when he comes home.\
Much love to you and yours.
Eddie and Rose Cherney

[Kim, mother of PreemieTwins.com]

One of my preemie twins had an ostomy bag as well and still has battle scars - a true miracle indeed!

[ostomy pouches]

Thanks for the update, Danny! I hope it will be great!

-Luigi