Cyrs

Cyrs

Tuesday, November 12, 2013

Two Weeks

Two weeks. Really, that's what it takes to recover from brain surgery. Whaaat?! We are one day shy of the two-week mark and let me tell you, if I didn't see the incision and experience the hospital stay for myself, I wouldn't ever guess Cameron had just had surgery! I'd say he's 90% back to normal. He hasn't had any pain medicine (Tylenol or Motrin) since Saturday and has only needed the "strong stuff" once last Sunday. If we ask him how his head feels, he answers "Happy!". He's mentioned once or twice in the last few days that his head hurt and he points to specific spots along the incision, but we suspect it's more the incision healing than him having a headache. He was very fast to get worn out for the first week-or-so, but that's fading now. We have been giving him a little extra TV time in the afternoon to help him wind down if he's been outside playing or running around the house.

With him acting so much himself, it seems silly that Shawn and I still have to take days off to keep him at home, but we were told months ago that he needs to be limited for at least two weeks. Even though he feels okay, his brain and head still need that crucial healing time. He also will be fairly limited for the next three months. He cannot climb on any playgrounds or do things like ride his bike or scooter for three months. It's dangerous if he falls from any higher than his own standing height, because it could cause much more serious trauma than it would normally. They didn't use any metal to put his bone back into place, instead they use a type of sugar-based plate that dissolves over about three months. So interesting! Dr. Lannon told us that the plates are about as strong as titanium and they absorb the fluids which help them to break down over time while the bone heals. He's fine if he hits his head or falls while running, he just needs to be careful doing anything more intense. He'll be going back to Preschool tomorrow, so we've talked with his teachers who know about everything that has been going on and are aware of his limitations for the future. We're thankful for their help and willingness to give Cam the much-needed attention, especially outside where he's certain to try and climb on the playground or get a little rowdy! We took him to my high school's football game this weekend and he had a blast! He was a little tired by the end of it, but it was fun watching him watch the players, then throwing our football back and forth, oh and drinking hot chocolate and eating popcorn...duh! :)

Upon leaving the hospital, the nurses and doctors had given us these sleeves to make Cam some hats to protect his incision. They don't put bandages on it because they are impossible to keep on and more of a nuisance than an aid. These sleeves are flesh colored, and meant to hold bandages on, but they made Cam look like a sick little kid. :-/ So, I went to JoAnn's Fabric and got some cheap cotton/spandex material to stitch some little hats together for him. He's much more comfortable wearing something on his head, and while we don't want him to be embarrassed about the big incision, we know it'll only take one person saying "Oh my! What did you do to your head!?" for him to be completely aware of it. So we wanted him to have some hats that he was comfortable wearing, that didn't look like they came from the hospital. So far, his favorite one is the Red Sox Victorino hat. Big surprise! :-P

Going forward, it is not uncommon for someone who has brain surgery to continue to have seizures for awhile. Because they dramatically changed the anatomy of Cameron's brain, it'll take some time for his brain to get accustomed to how it should function again. Luckily, he has had no seizures in the last two weeks! ::knock on wood:: He will continue to be on the same anti-epileptic medication for probably the next year. We have his follow-up with Dr. Lannon and Dr. Bauer next Monday, Nov 18th and we expect they'll say Cam is ready to resume his normal schedule and activities!

After the overwhelming amount of support that Cameron has gotten from family, friends, friends of friends and complete strangers, I decided I wanted to make Cam a scrapbook showing his journey and documenting as much of it as I can for him. My mom went with me to Michael's last week (Thank GOD for coupons!) and I got most of the supplies I needed. I got a lot of the scrapbook done this weekend, so I wanted to share some of it -- a virtual sneak peek, if you will. :)

This is showing the start of Cameron's journey - April 14, 2011, the day he was taken by ambulance to CHaD.
The day of his surgery - 10/30/13
I tried to get a snapshot of each and every Facebook comment from WHDH's post. There were so many, I wanted to make sure someday Cam could sit down and see how many people from all over the country were routing for him!
Kyle's awesome story in the Sentinel about Cameron and Shawn's tweet. So fun to see this on the front page of the paper the day we came home from the hospital!
Cam still talks about how he was on TV! Such a memorable experience for us all, and a great distraction after an incredibly stressful day.
The tweet that started it all, and Shane Victorino's reply. I couldn't get the hundred-and-something replies/comments/messages to Shawn from everyone, so I got the ones I could. Still so awesome to read!

I'll continue to post updates as Cameron has follow-ups and more tests to monitor how the surgery went. Thank you all again for everything you've done! We're so optimistic that this is the beginning of the end for Cameron's epilepsy. Happy Day!

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