Lizzie's Shunt Surgery - 08/26/09

Lizzie’s surgery went very well yesterday. We already see (or hear) improvements in her speech. It is so much more clear now, and doesn’t seem to be as strained. So we know it was the pressure from the swollen right ventricle that was causing her neuro set-backs. Right now she is still in a great deal of pain, but has just been given a “happy button”… so she’s got a fentanyl pump to manage the pain.

We had a very long day in the waiting room yesterday. Lizzie went into pre-op at 11:00 am, and put on her lovely hospital gown, made by Shalon by the way.

She went in for a CT scan at 1:00, and then was taken into the OR holding area at about 2:30. We thought that she was going to have the surgery then, but Dr. Kim came out at 3:30 to tell us she was finally going into surgery, and the surgery would take about 3 hours. So we expected to hear from him again by 6:30. Well, the OR called the desk at 4:30 to say that Dr. Kim called to say that he was starting the surgery then. HaHa...when the surgeons say how long a surgery will take, they are only talking about how long THEY will be working in her brain. They kind of forget that the hour-long prep still feels like surgery time to us parents who are waiting patiently in the waiting room.

Then, at 6:45, the surgical center waiting room desk clerk came to tell us that the waiting area closes at 7:00 pm, as does the parking lot, so we had to shlep all of our stuff over to the the main hospital surgical waiting area, as well as move our car to the main hospital parking lot. And then we waited and waited in the little, itty-bitty waiting room. Dr. Kim came in at about 7:30 to tell us about everything that he and Dr. Patel had done, and that the surgery went very well. He said he needed to go back in to close her up, but that would only take 15 minutes or so. So after waiting about 1-1/4 hours to hear from the recovery room I finally walked up to the neuro floor nurses’ station, where Lizzie’s room would be. They called down to the recovery and the nurse there said she had just arrived from the OR. Again, surgeon time…he would be in there for 15 minutes, but the rest of the team would be there for another hour removing her “halo”, monitoring her vitals, etc.

Knowing that Lizzie is a “slow to wake up in recovery” kind of girl, Don an I left to go out to dinner. Yummmmm, pancakes and eggs at Kerby Lane. Breakfast for dinner doesn’t get any better than that. While we were there, the recovery nurse called to say that Lizzie would probably be in recovery for another hour or so before going up to her room. And gave us Lizzie’s room number.

We finished dinner (kind of shoveled down so we could get back to the hospital) and went up to Lizzie’s room to wait for her. Finally, at about 10:30 she came wheeling down the hall to her room, awake and pretty alert. We spent a while talking with her, getting her Facebook login info (because of course she wanted to update her status right then, and it reads: “Lizzie is in the hospital and in PAIN!!! Owww!!!”,) and letting her know which of us would be-in-when today. We left the hospital at about 11:00, feeling extremely pleased that Lizzie was doing so well, and got home about 11:30. Whew! Long Day.

Since the time Don got in to see her at about 9:00 am, Lizzie has only slept about 20 minutes. Amazing! Right now she is reading and sending emails on her iPod Touch. And bugging me to get this update to y’all and to post a picture of her in the cute gown and cap she had on (briefly) yesterday.

Thanks for all of your prayers and good thoughts. It is wonderful to have such a wonderful support community of people who understand what she and we are going through.

(Update: she just fell asleep…it’s 5:00 pm.)

Hugs and Kisses,

Kati…tell Lizzie that we are all so pleased that the sugery went well. Sorry she’s in pain, but you gotta love that “magic button”! She looked lovely in her Gown by Shalon. Now, Kati, you need to get some rest. A very long day indeed. Best wishes for a speedy recovery.

Glad to hear Lizzie is doing so well. Get well soon Lizzie and best wishes to everyone.

Whew. So glad to read that. How awesome to hear improvements in her speech already. That is great news. I’m sure she will be exhausted for the next few days. Let her know we are all thinking of her. She is looking so beautiful in that photo! The gown is lovely too- my new favourite, Shalon. Great job.
Kati, you must be so tired. What an exhausting and stressful day. Try to catch some naps in the next few days if you can.
Keep us posted please!

Glad to hear that everything went well. And also that the gown worked out! And of course she needed to update her FB status! I mean how else would the rest of the world know what was going on? How did any of us ever keep in touch before FB??? :slight_smile:

I’m sorry that she is in pain. That is unfortunate but anticipated and only for a short time hopefully. It’s great to hear that her speech has improved and I can only imagine that means great things for her continued progress.

Please pass along a big smile and hug when she wakes back up from her nap!

Good luck tomorrow with your husbands surgery. And then it will eventually be time for you to rest. I think that Nurse Mom deserve a pedicure or something for doing such a great job as a care taker!!!

its good to hear things went well we hope for a quick recovery. me and my wife will be praying for you guys.

I am so happy to hear the the surgery went well. I hope ya’ll get some rest.

I’m so glad to hear that LIzzie’s surgery went well!

love the gon,
so happy to hear all went well and all my prayers have paid off…lots of rest needed for everyone now…hugs to all xxx

Katie, so happy to hear the procedure went well! I thought I was gonna need a shunt also, but my Neurosurgeon opted to start planning to remove my AVM. I feel for you and Don, as I can only imagine the 23 yrs of worry I have put MY Don and Jan through! Keep us posteed please! -GK

I’m so happy to hear that it went well, and that the surgery seems to have helped so much:) Hugs to all of you::)))

Hi Kati,

It’s wonderful that the surgery immediately improved Lizzie’s condition. Here’s to her continued improvement!

Take care,


I’m very sorry it’s taken me so long to respond to all of your comments. Life has been very hectic for me the past few days. It’s already 11:30 pm here and I’m still in Lizzie’s room trying to get this note out. Anyway, I really appreciate all of your good wishes…it means so much to have you all caring about Lizzie and my family. I’ve written another blog with an update on both Lizzie and Don’s conditions. Night, Night.