Friday, September 18, 2009

Waiting, waiting and more waiting

Unfortunately we are still waiting to see Julia. The recovery room is full and they are waiting on her room to be ready in the PICU. In the meantime we got an update that she is doing "awesome", in the words of the nurse. She's been sleeping a little but is now awake, she had a couple of x-rays taken (not sure for what...Elaine?) and was cooperative and did great with that. If recovery clears out a bit we can see her before she goes over to PICU but for now we won't hear anything until 3:30 at least.

We went to get some lunch and ran into Dr. Chugani in the hall. He basically reiterated what Dr. Sood but it was great to talk to him and get that extra reassurance. I asked him if we would be keeping her on Vigabatrin after the surgery and he said he'd like to get her off but we'd probably keep her on it for a little longer and then repeat the EEG to see what it looks like. Darn...she's been on it so long (since she was 6 months old) and I'd really like to see how she does without it. Either way it sounds like she'll be off it soon.

ETA: Thought I'd throw in a few pictures of Julia before surgery this morning:

Putting surgical gloves on puppy and dressed in her hospital gown.

Playing in the admitting waiting room.

8 comments:

billybadknees said...

your friends at Wornick are thinking and praying and glad things are going well so far...

JSmith5780 said...

Thinking of you.

My son was on Vig long term. The main difference we saw off the Vig (and not sure this is an issue for Julia) was MUCH better sleep patterns. He actually sleeps now, a restful, restoring sleep. Great for Austin and even better for Mommy.

In terms of development, we saw no changes, good or bad.

Lisa said...

Interesting to know. Her sleep has not been good for awhile now, not sure if it's the Vig or increased seizures...

Carol said...

Hi. I am Bennett's grandmom and my heart goes out to your family. Our thoughts and prayers are with you.

aylwardsinead said...

Best wishes for a comfortable recovery. My daughter Emma had surgery this year on her frontal lobe so I can imagine how anxious you are right now.

blogzilly said...

Sorry you have to keep waiting, that's tough. Hoping for a sooner rather than later Vig wean, problem is that they resist messing around with meds right after surgery. I had to fight to get them to agree to a slow Vig wean myself, and I am glad we did but at the same time I wanted to be sure they were on board before we did it.

Hang in there, it's a LONG week! :)

Sophie's Story by Elaine said...

The x-ray is to show the placement of the grids. Dr. Asano will give you a sheet of color coded paper that shows Julia's brain and where the grids are placed. They color code it based on seizure activity.

I hope you get to see her soon (if you haven't already seen her). The initial data sounds promising.

By the way, Dr. Asano is great at explaining things. I learned more from him in 5 minutes than I learned in the last dozen or so EEGs that Sophie had. I wish I could take a course just to explain what I see on that screen.

baby trevor's mommy said...

Warm thoughts & prayers from RI...

...danielle