A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Wednesday, May 25, 2011

Shunt watch

I really dislike shunt watch. I like to think the shunt is nice and happy and working well. I hate the thought that the thing in my sons brain that makes him healthy could stop working at any time, for no reason!

But I also know it is a necessary evil. And while I might wish he didn't t have it, that he was one of the lucky ones who have been able to miss this particular aspect of spina bifida, I have to be realistic that he just wasn't in those odds. That it just wasn't meant to be. He has a shunt and it is there to stay.

Shunt watch has different levels (sorry I couldn't resist these colour watches!). Green (everything is great we are good to go, measure every month or so, know what the symptoms are) Yellow (something is going on, not sure what it is, will continue to observe and measure, contact doctor by email, post on forums), Orange (something isn't right but I'm not sure what, I'm thinking of what I need for my over night bag, who can cover my shifts and where to drop Katheryn, but not packing yet - continue to watch and pray, its not an emergency, contact the doctor directly), Red (call the doctor, pack the bags expect the worst and hope for the rest), Black (heading in, no question we need help, hope and pray).

We haven't actually hit all these stages. Nicks last revision was probably a Red. This past week we had a yellow/Orange. I thought that things were probably ok, but something wasn't right.

Nicks fontanelle closed a couple of months ago. I had just done a whole "assessment" on the Monday - measured and plotted his head, felt everything and it was all a-ok!

Tuesday night, we are all in bed, I'm fiddling with his hair and feel his shunt. What the?!!
His shunt had moved. You could feel the bulb had shifted and the tubing before it. Oh no.

Nick looks up at me, flashes me his smile and goes back to laughing and playing with his sister. OK, deep breathes.
He's acting fine, no swelling or irritability, he's sleeping normally. He's acting the same! I really don't want to bring this happy kid into the hospital and have them tell me he needs surgery!!!

So I waited until the morning and contacted his neurosurgeon, left a message. Waited and watched. And posted in the babycenter forum. I kept silent for everyone else. Didn't want to make it real.

Shunt watch Orange moved to shunt watch Yellow when other moms said they had similar things happen. Nick also continued to be fine, none of the symptoms I was looking for. I kept feeling his head and it still was feeling wrong, but not wronger.

I thought about it, a lot. What if the shunt was out of place, what if he wasn't showing symptoms? What if we did the shunt series (ultrasound, x-ray) and said it had shifted. But he's symptomless. Would I want to wait? Pretty much. And shunt shifting wasn't on my list of signs to watch form
 

About a week later, and firmly in code yellow, I messaged his neurosurgeon again, who reassured me if he was symptom free there isn't any concern.

So we are not in green - yet. Maybe a lime green. I'm not 100% reassured, but I can sleep at night, and blog about it.

I can't say why I was so hesitant to talk about it. Why I was scared to put it in words or writing. But for now everything is good.

More than good! Nick is having a blast exploring and not showing any symptoms of any kind.

7 comments:

  1. Oh I dislike shunt watch too! We are just starting to relax now. But your neuro is right - no symptoms then there's no need to take him in. I have wasted many hours in hospital doing shunt series's with Caitlin not having any symptoms - (except for the raised fonatelle) and eventually being sent home. I'm not going to take her in anymore unless she is showing symptoms other than the raised fonatelle. I'm looking forward to it closing in a way. It goes up and down so much! Nick looks great! A very happy, smiley lad you have there :)

    ReplyDelete
  2. I hate "shunt watch"! Makes me crazy. There really should be an alarm or flashing red light on the shunt to let us know when it's not working!!

    ReplyDelete
  3. I'm sorry, Shunt watch gives you gray hair I swear!

    ReplyDelete
  4. Oh, shunt watch. My nemesis! Glad things seem to be moving to green.

    ReplyDelete
  5. Those darn shunts! I hope it's nothing!

    ReplyDelete
  6. Boo for shunt watch!!! I hope he's green very soon.

    ReplyDelete
  7. Of course we agree! This past Thursday, we had a CT Scan at the hospital, only to receive a phone call from our neurosurgeon's office shortly after returning home. The Dr. wants to see us Tuesday to determine when Landen's shunt is going to be revised. As sad as that makes us, we'll certainly do what's best!

    ReplyDelete