December 12, 2007

Toxic Evan

This week has been a whirlwind we didn't expect, but we're so glad to be at NYU Hospital to get everything sorted out. The big news is that Evan is toxic and in this situation, that is good news. Dr. LaJoie suspected it and the tests confirmed it. Basically, he processed the meds differently than they would have expected. When he left the hospital after surgery his level was 9 (a little low) and they raised the meds a touch to get it up a little. For whatever reason, the level skyrocketed for him. Dr. LaJoie was expecting the level to be around 18, indicating it was a little high and it came back as 30! That made a diagnosis pretty clear and we have begun the process of reducing Evan’s meds. This means the seizures were provoked (by meds) and that is great news. We’ll be in the hospital a little longer and hopefully when the meds are worked out we won’t see any more seizures.

The hospital is really busy with epilepsy patients this week and they are diverting patients to other hospitals, so we’re just happy we were able to get in. Dr. Weiner told us he had to cancel two surgeries this week – I can’t imagine getting that call! Unfortunately, there wasn’t a room available that is hard-wired for the Video EEG machine so they had to bring the VEEG equipment into the room. Being in a hard-wired room gives you the freedom to unplug and walk down to the playroom and plug into the wall there to continue to be monitored. Evan was starting to get a little punchy sitting in bed all day, and we moved to a hard-wired spot this afternoon and he was happy to get to move around a little more and go to the playroom.

Luckily, Evan has been in a pretty good mood and that really makes things easier on us! He likes being naked and doesn’t want to wear anything so he’s been hanging out in a diaper (we’re back to the drawing board with potty training since surgery). I thought I’d share this photo from last night of Evan multi-taking: VEEG, playing with trains and watching TV. Now all he needs is someone to fan him and feed him grapes!

We finally got him in clothes today – you can’t walk around the hospital naked! At least that's what we're telling him! Things are looking good and we're waiting for the news that we can go home.

4 comments:

Chuck said...

Can't wait to see Evan home again.

Aria and I are having lots of fun while you are away. I think she enjoys manipulating her uncle a bit. I am sure I have unknowingly let her break many rules but she has been fed and made it to school every day. I really like when I let her do something and afterwards she says "That is the first time I have done [fill in the blank]. Mommy and Daddy never let me do that." This should be fun for you when you get back.

Kelly has helped out the last two afternoons. It has been great to have her entertaining Aria after she gets off the bus. Somehow Kelly manages to stay ahead of the game. She cleans the house, does the dishes, gets Aria a snack and get the homework done. When I am "in charge" I barely get anything done until after Aria goes to bed at midnight. ;-)

Today I left the house a mess (piles of dirty dishes) and made sure I stayed away until Kelly had a chance to clean up.

I hear there is some nasty weather approaching the north east. Hurry home but drive carefully. (and loan me a dollar)

Uncle Chuck

Mary said...

Can you loan me a dollar too?

That's a great picture of Evan! I'm so glad you were able to get a room at the inn (I mean hospital), and one with built-in VEEG is great.

Does Evan have to wear clothes in the playroom?

It really is weird to think toxicity is a good thing, but it is good to have such a manageable cause for the undesirable seizures. James thinks the level change is due to finishing the steroids. I wonder about the liver/kidney impacts (whichever site processes the Trileptal). See, we have to sit home and micromanage his treatment since we aren't there to do the coffee run.

Thanks for the update.

Hugs to all,
Mary

The Mirandas said...

We are happy you are in good hands but come home soon. We are thinking of you and your family.

Do Chicks dig toxic too?

Anonymous said...

I'm so glad to hear your good news and hope that you'll be home soon, though it sounds like Aria has a good thing going with Chuck.

Claudia