Reservoir Dogs

 

Damn fucking roller coaster. Pardon my French but just as we dared to relax a tiny bit inside of a series of positive developments with our son, word comes today that he has to have another surgery tomorrow. They’ve been monitoring the fluid in his brain via ultrasound and by touch and after two ventricular taps they’ve decided that the build-up requires the surgical implantation of a ventricular reservoir, possibly followed by a shunt when he’s bigger, to drain the cerebrospinal fluid that is increasing because of his Level III and Level IV Intraventricular Hemorrhages or bleeding in the brain. (Now there’s a sentence I’d never thought I’d write once I decided at a very young age that I wouldn’t be going to medical school!) Yuck. We were hoping to avoid another surgery and while this one is fairly common for babies in Charlie’s situation, it carries a number of risks including those associated with any surgery on such a tiny baby. Plus, he seems to have a bit of an infection today which could delay the surgery so we’re all feeling rather tense (if by “tense” in my case you mean nerves that feel like they are flayed open and getting a slow drip of corrosive acid).

Am I being punished by the Evil Eye for my recent “lighter” posts? Did I not spit three times after repeating all of Charlie’s positive developments? Or is this just the freaking roller coaster/two steps forward/one step back that everyone in the NICU keeps warning us about?

I probably shouldn’t even be talking about this yet before our official meeting with the neurosurgeon but I want everyone who’s praying for Charlie to send positive thoughts for tomorrow. I’m also interested in hearing from any micro-preemie parents whose kids have had success with this reservoir and/or shunt.

Let's bring this roller coaster back to the station, folks.

Comments

[Julie R.]

Danny,
I will be thinking of Charlie, sending positive and loving vibes to L.A. Don't be hard on yourself--you've had cause for happiness. Hold on tight, and keep us posted.

Love,
Julie

[Jeff]

Stay strong Charlie!

[Ellen B.]

Keyn aynhoreh! (Spit, spit). Keeping good thoughts!

[Jen]

sending many many MANY positive thoughts your way. Easy, successful surgery!

[Elaine Soloway]

Prayers continue...
Strength and blessings for all...

xoxo

[Suzanne]

thinking of you all-- charlie is a strong, brave soul!

[Arlene]

Sending positive thoughts your way and keeping everything crossed!!!! Charlie is strong and is going to get through this!

Take care, Arlene

[Alexis]

Big love and lots of light to all of you tomorrow. In our hearts and prayers . Every minute.

Stay strong.

Love, us.

[Leightongirl]

I'm with you, friend. Will be back at CSMC Thursday. I'll stop by to hold you tight.

[K Wild]

Positive thoughts coming to you and Charlie every day, whether you ask for them or not!

[F]

positive thoughts speeding over the Pacific for you all

[Marilyn Molnar]

My most positive thoughts as well as prayers are with Charlie and you and Kendall.

Love,
Marilyn

[amba]

Danny -- a friend who wrote to me earlier (I passed it along, of course) about two brothers both born premature who had many early problems but are fine, adds the following, word for word:

I'm not yet into leaving blog comments (you may have noticed) but your friend asked for some positive feedback re a "ventricular reservoir, possibly followed by a shunt when he’s bigger, to drain the cerebrospinal fluid that is increasing" and since you told him about the two brothers who were both preemies and are now healthy big boys, you might let him
know (if I were still in touch with this family, I'd make this connection more direct, or at least be able to get more detailed info, but....) that one of them, the first, I think,
so this was 15 or 16 years ago, also had a shunt. I don't know whether it was preceded by a ventricular reservoir or whether that was even technology that existed
back then. At any rate, to repeat, he's fine, totally fine, despite the very rough early months. Pass along if you think it would be helpful. I don't know the official
cut-offs for preemie vs micro preemie, don't know even when that distinction started being made, so can't measure the relevance of these stories; the kids were both
two- pounders, far as I remember.... do what you think best with this.

[n.b. scott]

you're not being punished, danny. it's the universal roller coaster, which strikes anyone and everyone no matter what and is unpredictable, and that unpredictability can surely be cruel at times.

i haven't commented in over a year. i'm an "older" late-at-discovering tweedy/wilco fan who discovered your blog via via chicago a couple years ago, and commented a couple of times around then. you even emailed me a thank-you, which was really nice of you, above and beyond the call of duty!

your blog is one of the very few i read somewhat regularly -- you're so intelligent and witty and quirky in a good way. and i learn things from it.

i checked in a few weeks ago after a month of crisis with my elderly dad, to find what an extremely difficult roller coaster you are on. and have kept checking in, and wishing you and yours the best.

you are wonderfully honest, and i hope your son will grow and be well and ultimately learn that from you. whatever happens, i think all the qualities you've shown in your blog will see you through. i believe that completely.

nancy

[[email protected]]

Hey Danny
Keeping up to date with your informative blogs. I dont know how you do it, but I Guess it is some kind of therapy for you.
Obviously we are all praying for you guys, in our own different ways. Who cares which side the prayers come from.
Fraaaaaaaaank

[Pam G]

You all will be in my thoughts today and in the days to come.

[Momo Fali]

I don't have experience with this particular surgery, but I have two preemies and my seven year old son has had nine surgeries. I am familiar with that roller coaster. It never fails to make me want to puke either.

Sending good thoughts and wishes for a positive outcome for your child.

[orieyenta]

We've constantly kept you, sweet Charlie, and the rest of the family in our thoughts and prayers. We'll be at the Kotel soon and will place a note there for you all as well.

Sending you much love and support.

[gorillabuns]

I don't have experience with this procedure but will be praying for you.

[Pearl]

Sending many brachot/blessings your way.

Hope you all come through this surgery with flying colors, and can soon write some more lighthearted blog posts, Danny.

[Sally Northrop]

Thinking of you all today and everyday.

[Chris]

My stomach feels like I've just been on the roller coaster after reading this... I can only try to imagine how you and Kendall must feel. Thoughts and prayers for Charlie and parents, continue.

[MoDLin]

Two steps forward, one step back. Keep moving toward home. Our thoughts and prayers are with the three of you.

[churlita]

I'm still hoping and praying for good things for Charlie.

[Judy]

Looking at this video at home,remembering you Uncle Paul saying that his Grandpa would ask him are you a boy or a girl... all I thought was, what a wonderful mensch you are. Your Great grandpa and Great grandma, your grandpa and grandma, and your Mother must be very proud of you and your beautiful wife. Prayers and good thoughts for Kendall, you, Leah and Chaim Charlie. May you all have continuing strength to ride the roller coaster.