Excellent!

Using this post as a way to help myself stay awake while watching the Patriots game tonight!

Cameron had his post-op check up today and it was a wonderful appointment. We saw Dr. Scott Lannon who said that Cameron looks "excellent". He told us that Dr. Bauer was going to be thrilled to hear about how well Cam is doing! He said his incision is healing beautifully and even said out loud "Wow, he did a great job with that!" - I'm thinking he was referring to Dr. Bauer's handy work. :)

After we came home from the hospital two weeks ago, we noticed that Cam seemed to have some increased sensitivity to a few of his senses. For instance, he would be nearly in tears when the sun was in his eyes, always needing his sunglasses or pulling his hat down as far as he could get it. He also loves water - swimming, showering, bathing, playing, etc. After his surgery he wanted nothing to do with it, he kept telling us the water was too cold. We had no idea if it was just coincidence since he hadn't been allowed to shower for a week or if something had changed. Dr. Lannon told us today that sometimes after brain surgery kids can have "pseudomeningitis", meaning he has symptoms that simulate meningitis, but there is no actual inflammation of those membranes, and the symptoms gradually go away. He doesn't have these sensitivities any more, so there is no worry that it was something more serious.

He's had a great few days back at Preschool, and when we went to pick him up early today, we saw they had taped The Sentinel's article to the front door (we don't normally go to the front door because they come get the preschool kids from outside). The woman in the front office told us a nice story about her foster daughter who has been seizure-free for 15 years since having a similar surgery when she was a teenager. It's always so nice to hear success stories from people who have shared similar experiences.

We've had a great two weeks spending some serious Q.T. with Cameron. We've taken him to two local high school football games (albeit, both home teams lost...), and he loved every second! We visited Shawn at work and ran around the news room, watched a few movies and a lot of Sesame Street, made a scrap book and spent a lot of time playing. We were so happy to hear that he is healing right on track!

His incision is looking great, too. He hasn't worn one of his hats in two days, but did tell the doctor today that his head is itchy. He hasn't been touching it or picking at it much though! He really is a trooper.

We will have an appointment to see Cameron's Neurologist - Dr. Morse - in January, and we see the Neurosurgery team again in Feb/March. It's routine for them to do a follow-up MRI three months after surgery, so Dr. Lannon said he'd schedule that himself. If everything looks good, then Cam will follow up with Neurosurgery yearly. Dr. Morse will still be seeing a bit of us for awhile though! Cam has had no seizures ::knock on wood again:: and we are hopeful that will continue!

We have been blessed with the opportunity to have another benefit fundraiser organized for us this Wednesday, November 20, 2013! This time it's in my hometown of Pawtucket, RI at Sullivan's Publick House. It's a really awesome place that does Community Pint Nights on Wednesdays, where a keg is donated by a brewery and proceeds from the $3 pints are donated. My cousin Meaghan and her husband Greg, among others I'm sure, have organized some fantastic raffles including a 2013-2014 Official Boston Bruins team autographed hockey stick! (SWEEEEET!) I will be there, but unfortunately Shawn won't be able to make it down as Cam still has 18 years before he's allowed in a bar. ;)

Again, thank you for the continued support! Go Patriots!

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!

CUE THE DUCK BOATS!

Sitting at home, watching the Red Sox World Series Parade and feeling so, so thankful for everything that has happened this week! (As I type this, Channel 7 News, reporting on the Sox Parade, just mentioned how Shane Victorino is a fan favorite and lifted the spirits of "a little boy in NH"!)

Tuesday afternoon we drove up to DHMC for Cam's pre-op appointments. We talked with Dr. Bauer and Dr. Scott Lannan -- Dr. Bauer's APRN -- all about what would be happening the next day, really hammering out the schedule for Cam's surgery. We had to be back to the pre-op area at 6:30 a.m. on Wednesday, so we left and got our room at David's House, let Cam play outside for a while (they have an awesome playground) then enjoyed our night together.

Wednesday morning we arrived to the pre-op area and were taken back to get Cam changed, then he got to play in their playroom while the many doctors came in to ask us questions and introduce themselves. By 7:45, I was riding on his bed with him into the OR. He got to play with an iPad while he got the anesthesia. Luckily they were able to avoid drawing blood or putting his IVs in until after he was already asleep. From there, he was getting all set up for surgery, then having an MRI, then being taken right back into the OR. The day was long -- Shawn and I spent most of it with his parents, Faith and Mike, playing games, walking around, eating breakfast and lunch. At 1 p.m., we got an update that they had finished the retraction of his brain and Dr. Morse was being brought in to place some electrodes to try to get some EEG readings from other areas of his brain, and they would be closing up shortly.

At 2:30 we were paged again, so Shawn and I (quickly) walked over to see Dr. Bauer walking around the corner with a big smile on his face, and we were able to let out a huuuuge sigh of relief! He brought us into a consult room to let us know that everything went great. The removal of the sections of his brain were very routine, nothing surprising. When they placed the electrodes they saw no obvious seizure activity, but did see a little "irritation" in the back section of his brain -- they're not sure if that will clear up, or really what it meant, but they weren't worried about it. Cameron was then taken down to the Pediatric Intensive Care Unit, where Shawn and I met him shortly after. He was crying a lot, very groggy and didn't even open his eyes for probably a solid hour after getting out of surgery.
I had leaned over his bed to give him a kiss and he wrapped his arm around my neck and didn't let go for upwards of two hours. I treasured the moment, but man, did my neck hurt after that! Haha

Throughout the day, he was really groggy and grumpy. He cried quite a bit about how his head hurt, so they gave him morphine and we tried to keep ahead of it as much as we could. That night, we were getting excited to watch the Sox game, and were hoping for a World Series Championship!
This was our setup:

And this was the picture that started Cam's face being shared across the country!:

We were so excited that Cam was starting to feel better, smiling a little and talking some, snacking on crackers and drinking a little water, then the game started and Shane Victorino smacked that three-run double to start the game, it was really a special moment. Cam has cheered for Victorino all season, most of you know, because he's #18 -- Cam's favorite number. At that moment, we were so happy and so excited! Cam had already fallen asleep, so I leaned over and whispered in his ear "Victorino got a hit, bud!" Then Shawn decided to share the moment on Twitter, and from there the whole situation was an absolutely awesome distraction for us while Cam was still in the PICU! The first night was a little rough, Cam had woken up around 2 a.m. crying, so they gave him some more morphine to help him sleep, then around 5 a.m. I noticed that he had completely soaked his bed -- the nurse said because of all the fluids he was getting, diapers fill quick. So we had to pick him up and change all of his sheets, which didn't go over too well. After we laid him back down, he was pretty inconsolable, crying because his head hurt so much, so they gave him a "breakthrough" dose of morphine. From there, he slept pretty well into the morning.

Throughout the day, we really just tried to manage his pain. He's on steroids too, which makes him very emotional, so he was really weepy and easily upset, but overall pretty good. Mid-morning Dr. Bauer came in to check in, and suggested Cam get up and go to the playroom! He was all about it, until he pulled his blanket off and was covered in blood! His IV had slid out, but his hand was under his blanket so we didn't see it! He was fine, but didn't end up getting up and out. We worked all day on trying to just get him to sit up, but it was pretty painful for him. In the early afternoon, a woman came in and asked for Shawn. She said there was someone from Media Relations on the phone for him. We had NO idea what was going on, but then Shawn's cell phone started ringing -- it was his boss, Paul, from The Sentinel!

I answered it, and Paul was laughing -- he said that Channel 7 News from Boston had called The Sentinel looking for Shawn, they wanted to talk to him about a tweet he sent! That tweet had almost 300 retweets, almost 400 "favorites" and over 100 replies -- some by major sports guys from WEEI, NESN and WBZ! We couldn't help by giggle about the whole situation. Channel 7 News set up a satellite interview for Shawn to go to Dartmouth College and talk to them. We organized some pictures of Cam to send and told Cam he was going to be on TV! It was so fun to see, and we even had nurses coming up to Cam and telling him they had seen him on TV! WHDH Article and Video

Then The Sentinel did a story about what was going on, so Cam's cute face was plastered on the front page of Friday's paper! What a fun treat to come home to! Thanks Kyle, for writing such a sweet story about him! Keene Sentinel Article

Thursday night Cameron was transferred upstairs to the Pediatric Unit in CHaD, though the room was smaller, we were more comfortable there, as we know that floor pretty well, and know some of the nurses too. He had a pretty good night sleep and the next morning, Dr. Lannan came in and said that if Cam got up and moving, he could go home that day! He told him about a race car video simulator they had on the floor that Cam could go play in! Within minutes, Cam had sat up for the first time since Wednesday, and was climbing off the bed to go check out the race car!

We really think he could tolerate a lot more than he thought he could on Thursday. Once he was up, he didn't stop for about an hour...then he crashed! Haha. He slept for two hours after that and while he was napping, we got the okay to be discharged! They were able to get oral steroids, which was the only med he still had by IV.

We've been truly blessed this week, by the surgeons, doctors and nurses, our family and friends, and people from all over the country wishing Cam well, praying for him and truly showing us the most incredible amount of love and support that we could have ever asked for! Cameron is one lucky boy, that's for sure! Cameron is doing great right now. He's very easily worn out, but has been in an awesome mood all morning. He's very giggly and has his silly sense of humor back! We're so proud of him and how well he's dealt with everything this week. He's a strong little monkey!

"Don't worry, about a thing. Cause every little thing is gonna be alright." - Thanks Shane!!!