December 11, 2007

Evan's Back in the Hospital

Today I am writing with a heavy heart. On Sunday, Evan had three seizures and then had two more on Monday. The seizures were a little different: longer, with dizziness and vomiting and complete exhaustion afterward. We talked to Dr. LaJoie on Monday morning and she wanted to hook him up to a video EEG in the hospital so we quickly packed a bag, called Chuck to ask him to stay with Aria, went to Aria's school to let her know what was going on and headed toward NY.

We arrived at the hospital at 3:30 pm and were in his room on the Pediatric floor within an hour. They drew blood to check medication levels among other things. Next, Evan had a CT scan to make sure everything still looked good from a surgical perspective (it does). Finally, at around 10:00 pm the EEG leads were on and he was hooked up to video. Evan was up until around 11:30 pm and seemed to feeling pretty well. We haven't seen any additional seizures, so we're just watching him for the time being.

After we got set up in the room, Rob went to the PICU to say hi and a few nurses came over to the main floor to see Evan. He has a lot of friends in the hospital! Sadly, there are families we left behind who are still here, but we were happy to see that the little girl we shared a room with in the PICU is awake. She arrived a few days after us and was seizing nonstop. The doctors basically put her in a medically induced coma in the effort to calm her brain down. We were so happy to see her awake and get a glimpse at her beautiful brown eyes. They will still be here over Christmas but they are hoping to take out her breathing tube today or tomorrow and her mother will hold her for the first time in over a month. This sounds so sad but it is really happy news.

A steady stream of doctors came in to see Evan this morning. Evan's neurologist, Dr. LaJoie, thinks there is a good chance that Evan is seizing due to the Trileptal he's on. Medications effect everyone differently and when the level is too high it is considered toxic. There are set levels known to cause toxicity, but it's also possible that the drug is toxic at a lower level for Evan. The bloodwork results should be done by Thursday, but until then, Dr. Lajoie will treat Evan as if he is toxic and begin adjusting the meds a bit. She feels the symptoms we're describing point to toxicity and we're hoping that is the case.

For the time being, we are settling in for a somewhat extended stay in New York. Evan will be in the hospital at least until Friday. Last night Rob and I both slept at the hospital but a social worker here arranged to get a room for us at the Ronald McDonald House in Manhattan. Usually the Manhattan Ronald McDonald House is reserved for cancer patients, but they had space available so we got lucky.

Our current challenge is trying to find a place that will deliver a decent cup of coffee! Our runners (AKA Chuck and Becky) aren't here so we're on our own! Coffee isn't a problem, it's cappuccino -- all the delis have the machines with the push button cappuccino and we're looking for the real deal!

I'll update when I can, hopefully with good news!


Ken Halla said...

Lisa. We are thinking/praying for Evan (and you two). I talked to Chuck and last night and reminded him we are happy to take Aria for any length of time. I am hopeful it is the medicine that is causing the problem (esp since he has never vomited before - hey I can be an optimist too).

Anonymous said...

Glad to hear from you. I was so worried when I heard your voice message yesterday. I am thinking of all of you -- let me know if there is anything I can do to help. Keep us posted on how Evan is and let him know we are all pulling for him and hope he feels better very soon.

Laura Osborne

Mary said...

I heard that Evan is glad to be back where he can have a grilled cheese sandwich delivered at any hour. Surely there's somewhere nearby that can deliver a real cappuccino for his parents!

Thanks for keeping us up to date!

Love to you all!

becster said...

Just say the word and I will fly out and bring you coffee. Much love to Evan.

kathy said...

I'm so sorry to hear that Evan is back in the hospital. He was doing so well. Hopefully he'll get his meds adjusted and you'll be back home in no time.
You guys need your own little portable coffee maker to make yourselves a fresh brew... johnny on the spot. I wish I could make you a fresh pot myself.
As you said yourself, stay optimistic. The hardest weeks of your life can't go on forever. Hang close together and know that you have a lot of folks who are pulling and praying for you all!

Anonymous said...

Lisa and Rob,

I wish we could do more than keep sending our love and support, which you know you always have.

I'll volunteer for coffee duty too - if there's one thing I'm good at it's coffee. Wow, you guys command quite the delivery area!

Kisses to Evan.

Love from

Robin & Keith said...

Hang in there! This is a minor setback. Evan is in the best of hands now. And you always said that he responds to meds textbook. ;) This too shall pass.

You all are in my prayers.

Mama Lisa said...

Thanks everyone! Evan is doing much better and I'm so glad we are at NYU Hospital. They really are amazing here!