December 18, 2007

PT, PT and more PT

Physical therapy is the name of the game now. Evan has PT four times a week and his therapists are working him hard. He thinks he's playing, and that's pretty much the only way it'll work with kids. We've seen a lot of good progress and he improves in some area every day. He's still not as steady as he was pre-surgery, but we expect him to get back to where he was at a minimum. We are hopeful that he will surpass his prior goals, but we're all taking it one day at a time.

Watching Evan reminds me of when he was learning to walk and everyday there would be something new. We've watched him go through those milestones all over again: wobbly steps, standing up with assistance, walking with confidence, managing stairs, standing up independently, running, etc. He's still pretty wobbly when he runs and has a lot of strength to regain in his legs, but he has a lot of energy and that works in his favor!

December 13, 2007

We're Home!

We are home and so happy to be back. Aria and Evan were really excited to see each other and it was so cute to see them together after being apart for a week. It is so cool to see the close relationship they have and it makes us feel so proud.

Being in the hospital is such a surreal experience -- life just stops and everything revolves around when doctors make their rounds, medical tests and hospital activities. Night and day blend and you completely loose track of the day of the week. You bond with strangers going through similar and different experiences at the hospital.

Since we were just in the hospital, Evan got lots of visits from PICU nurses and they all made him feel so special. There really is something special about someone who chooses pediatric nursing as a profession. We have met too many nurses, but the ones who work with kids are really special people who probably never even know how significantly they impact their patients.

We are again thinking about how fortunate we are to have such a strong support network, and although we're ready to not need it, we are so thankful! Uncle Chuck came through again (as always) and hung out with Aria while we raced off to NY. She may be ready for us to leave again since she's pretty much gotten her way all week -- she really had a blast with him!

Our phones have been ringing a lot and we appreciate all the calls and emails. Hopefully when we get a couple decent nights of sleep we'll be able to catch up with everyone. Evan is doing well again and we are looking forward to putting all this behind us and only going back to NYU Hospital for scheduled visits!

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.

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!

December 04, 2007

Two Week Post Surgery

It has been two weeks since Evan's final surgery and he hasn't had any seizures (knocking furiously on wood) and is doing really well overall. He still has a decent amount of weakness on the left side but he's getting stronger every day. He has a lot of trouble with stairs and still can't stand up unassisted if he sits on the floor, but his train table has offered him a ton of PT opportunities he isn't even aware of. He stands at the train table, walks around it, reaches across, bends over when he drops trains, etc. Evan doesn't know it, but his passion is going to heal him -- body and spirit.

If anyone asked me to define myself in one word, I would choose "optimist". This is my gift and my curse. My gift because I can almost always see the up side of any situation and can turn any insult into a compliment. My curse because I don't like to admit when things are really rough. I never want to come across as a whiny complainer and it isn't productive anyway. I will say though, the three weeks we spent at NYU Hospital were the hardest weeks of my life. Every day was hard, each for a different reason. We were challenged as a family in ways we could have never expected and are so blessed to be surrounded by so many people who have offered support in many ways. I've said it before, but want to say again, thank you.

December 02, 2007

Chickens Dig Scars

We are back home and thrilled to be here! On Friday morning we had an appointment with Evan's surgeon, Dr. Weiner, and we flew home in the afternoon. We had been coaching Evan to say "Chicks dig scars" but instead he said "chickens dig scars". I guess to a 4-year-old the two sentences make about the same amount of sense. We can't take credit for the phrase though...before we went to NY for Evan's surgery, Andrew told me to tell Evan, "scars are cool and chicks dig 'em". Apparently what Andrew didn't know is that chickens dig scars too. Go figure! If you don't believe me, just ask Evan.

We haven't seen any seizures since the surgery which is really tremendous. We're hoping things continue in this way! When we were in Dr. Weiner's office, we asked Evan what he thought about Dr. Weiner taking his seizures away and he said, "That's cool...Dr. Weiner, I think that's a good magic trick!" We think he's right, it is a pretty good magic trick, but no smoke and mirrors for this one -- just pure magic!!