Wednesday, August 17, 2011

Chiari 1 Update: Better Than Birthday Cake

So after all of the anxiety, headaches, and tears (please note NOT from affected child, totally from mama), it has been almost anticlimactic. 9 days since cracking open O's little nut, and the biggest struggle has been trying to get her to take her antibiotics!

All went well. We checked in, doped her pre-surgery, watched her wheel away, and 90 minutes later were called into the recovery room where a very pissed off Olivia was groggy and demanding that the nurses remove her IV. They then wheeled her into the PICU where, for the next 24 hours she was monitored. She was very doped which went at times from sad to kinda funny in a "wow-I'm-a-bad-parent" way. Lovely nurses, lots of gifts from friends and family, and Olivia seemed to be herself. We then left the PICU and were wheeled into a normal room, and one hour later, signing Discharge papers.

And that, folks, was it. They had assumed 3 days in the hospital, we left after a little over a day. They sent us home with meds and an order to avoid standing water and trampolines for two weeks.

And results? It's a bit too early to tell. Her brain still needs to retreat from her spinal column into the new space that was opened up. This can take weeks. This will then reduce the pressure and allow spinal fluid to move normally. Only another MRI can confirm this, so one is scheduled for the fall.

Her eye is still a bit crossed, and the stimming actually seemed to increase for a few days, but then has tapered off a bit. It is still unclear if she had related headaches to begin with. Will the absence of pressure on her cerebellum alleviate these in the future? Time will tell. At this point I'm more worried about making things worse, or discovering that the surgery was unsuccessful and we will have to go back in again.
But it seems the more I worry the less goes wrong (and the more weight I lose!). I will accept that trade for now.


  1. Great news -- fingers crossed over the next few weeks -- hoping for a speedy recovery for O (and the rest of you!).
    Michael (Dash's pop)

  2. this is great news! glad to have read an update....I have been thinking a great deal about you guys! sending you love!

  3. Wishing O speedy recovery and great MRI results. Thinking of you.

  4. I'm so glad to hear that Olivia is back at home! Ellie and I have been thinking of you guys and wish you all well.
    What a brave mom! I think I would have passed out from the stress.

  5. Hi Kristin, We are looking forward to meeting you this morning at Alameda School and for our children to meet. See you there at 11:00... or was it 11:30? We'll be there and just wait for you. Gr.Lauree