Father's Day - belatedly....

Matt said it best, the only thing he needed was Cameron home from the hospital. Wish granted.

Matt has spent 3 of his 5 Father's Days with Cameron at Children's, what a relief to have all of us together as a family to celebrate.

We treated the boys to brunch. The boys stuffed their faces mostly with items from the "Candy Buffet" and Matt got his fill of all manly meats and fish.

Happy Father's Day Daddy-O, as Cameron would say! You are a great father, you work so hard despite all the circumstances you just keep going and going, Bravo to you! Cameron and Connor are lucky to call you Dad.

And Happy Father's Day to the two Grandfather's; my dad, Captain Adventure! and Grandpa Chuck, the biggest Cubs Fan I've ever met!

The toughest 5 year old...

Is Cameron Dominick, yes, I am his mother so I'm biased. But I am telling you this kid is a rock star amongst the staff at Children's. He just rolls with it all and only once during our entire 5 day ordeal did he cry. When I left him in the operating room, that was the worst. And that was not pain, that was fear and love.

What a crazy 5 days, filled with so many emotions, not a lot of sleep, a room switch that left Matt cowering under his covers one night (ask him to tell that story). Let us just say that June 2012 when the new hospital opens and there will be ALL private rooms....can't wait.

On Friday after Cameron was finally feeling better and we went to the Life Center, the cast of Peter Pan was there to do a little performance for the kids. Cameron was super shy, but met all of the cast and Nana the dog (a giant puppet) it was awesome how the guy controlled this "dog". I loved hearing Cameron laugh out loud during the performance. NBC and ABC news were there and Cameron was on the news that night! He was SO excited when he saw himself and keeps asking to see it again. What's a little brain surgery when you are a now a celebrity in your own house, right!

Thank you to the many who sent well wishes and the balloons, stuffed animals and offers to help. Cameron is 5 now, and he understands what is going on, his shunt is a part of his life that he is starting to grasp. He noticed when all the other kids were getting balloons and presents.

One day I told him I was going to grab a coffee downstairs and his sweet nurse Elizabeth was going to sit with him for 5 minutes. When I asked if he wanted anything he replied "Mom, would you get me a stuffed animal dog, brown and white". I almost started crying, instead I quickly ran off to grant his request. He was SO happy when I brought him the dog and named him sparky.

So how's the hair you might be asking? He now has two incisions on his head, they went in to the same spot at September, about a 5 inch half moon shaped incision and a new 3 inch one a bit further down his scalp. Cameron will look in the mirror to check it out and asks when the stitches get to come out. They will dissolve, he's not really grasping this concept.

His long locks allow us to cover the incisions up for the most part, so as not to scare the kiddies. The day we got home we went out for a family walk, Cameron's hair was still in a mohawk from all the goop and by the expressions on some of the neighborhood kid's faces it was clear it was all a bit much to see.

He can't swim for 3 weeks, so the swim lessons are on hold and we created a "chain link" countdown for him to pull off each day as it gets closer to July 9th! He takes it all in stride.

I could write for days, but still trying to catch up on sleep, or maybe it's start sleeping again?

About 2 hours after Cameron came out of recovery and the Dr's rounded Cameron was doing really well at this particular moment, it was somewhat hilarious. They come by and he's sitting up in bed literally shoving Pirate's Booty into his mouth directly from the bag (thank you JENNY!!!) his hair is standing straight up and he looks like a guy who just came home from an all night bender. I think it was a little comic relief everyone, including his doctors' needed. The Fellow said, "So this is Cameron Dominick who just had brain surgery and looks to be doing quite well!" everyone laughed. Connor has been a great little brother, he understands Cameron has a big "owie" on his head and we need to be very careful. Many thanks for all your support.

Tomorrow is his 4th MRI in two weeks, we'll see how these ventricles look with the new valve in place, we'll see Dr. Bowman to talk about it all. Hoping they are a good size, but not too big...

Is it the Morphine, or are the Chipmunks and Chipettes above my head right now?

Post Surgery

Sorry for the delay, but we're exhausted.
Cameron came through surgery well, they put in a new valve and catheter. Only time will tell if this will work, and by time I mean days, weeks or months. My hope is months. Even if we can get just 6 good months that's fine with me.

If we find ourselves in the situation as the past 10 days, then we will discuss another surgery that has more risks involved, it's actually the surgery he had at 3 weeks old. ETV.
And then there is another even more rare option to add another valve in his chest.

I'll explain all this more in another post. For now we had hoped to be bringing Cameron home today, but he's been on/off with a fever all day and night. I think he and I slept a combined 3 hours last night. We had a donut together at 4am, that was fun.

It's just after 6pm and I left the hospital for the first time since Monday morning. Matt is on duty and because Cameron is now with a fever over 102 we are moved to room 327 - bed 2.
Matt just helped Cameron through some blood work (more sticks!) and catheter for urine (different than the catheter in his head, but same idea). Cameron hates this, but we have to try and find the source of this fever.

Pray for a source and NOT infection as that will lead us down a whole different, very nasty path.

Surgery underway

I left Cameron 20 min ago in the OR. He was very upset. This is tough, him getting older he now understands what is going on. We promised him visits from all his favorite neighborhood girls, and he nodded yes.

I just bought him Alvin, Theodore, and Simon stuffed animals from the gift shop and had to hold myself back from buying the Chipettes! He loves The Squeakquel.

He had a very sleepy morning, some head pain and low heart rate, hoping this brings him relief.

Now we wait....

Surgery is scheduled

Yesterday was a long day, followed by waking up around 4. Getting sick 3 times, back asleep, and then around 9 Cameron finally awoke from the brain fog.
Just in time for bed!
We watched a little wall-e and called it a night just after the midnight blood draw, don't ask me what that was about.

4:30 am rude awakening tons of pain, slept it off with some meds. He was feeling better around 8. We headed to the life center for 2 hours, they had an improv group there, Cameron thought they were pretty good. Even if their humor was more geared to the parents! They made funny noises and what 5 year old doesn't love that.

We have attempted lunch, but he's down and out again. Spoke with Dr. Bowman and is slated for 10ish tomorrow to do surgery. Assuming no surprises when they open him up a new valve will be placed. If this does not work there will be talk of adding a 2nd valve in his chest. I don't want to do this and I can tell neither does Dr. bowman because she wouldn't even discuss it in detail saying it's rather complicated and would like to avoid this.

So we are going to take this hour by hour and focus on an event free 24 hours and successful surgery.

Tomorrow will be hard, but we can do this! And most importantly Cameron can!

We'e opened our summer home

We're back....
A brief update:

We are in room 321 bed 2 or 5 I can't tell. It's the step down neuro icu so there are no walls, only curtains and 5 others in the room.
In all seriousness, we know the constant care room well and some of our favorite nurses have stopped by.  We even got to see Cameron's physical therapist who went on maternity leave in Feb.  Cameron loves her, and she is seriously the ONLY person who has gotten so much as a smirk out of him.

Unfortunately Cameron is not getting better, he has been asleep since 11am, with a brief awake period when they blew a vein putting the IV in.

As I type this is heart rate is dipping below 70 repeatedly and so the loud alarms are going off.  The plan is to page dr bowman once we get the bolus complete.  She's out of town till tomorrow so if surgery is going to happen, which looks all but certain, we want to wait for her.  

I spoke with dr smith, the neurosurgery resident at length, he's good.  I like him and he's cute.  Usually the cute ones are assholes, not this one.  

Once I review all our questions with bowman I will send a more detailed update on what the problem seems to be.  For now I just hope he will wake up soon and show us some sign of improvement.  
Thanks for all the well wishes.

inpatient until then?  
Sent via BlackBerry from T-Mobile
Sent from my iPad

On Jun 13, 2011, at 11:48 AM, rory.dominick@gmail.com wrote:

We do not have an acute malfinction. They are getting Bowman on the phone and recommending we be admitted to be sure he does not deteriorate and try to get some improvement?. Not sure when we will talk to Bowman but it will be before a likely  surgery on Wednesday. We may be inpatient until then.

We are back in the ER. Bad night and rough morning of vomiting. Waiting for MRI and shunt series.
Heart rate is low they are concerned he actually might be malfunctioning this time.
Will update once we have results. As of last Friday Bowman's office had suggested Surgery this Wednesday. But we want to discuss this suggestion  in detail first.  I will try to update blog later.
Sent via BlackBerry from T-Mobile

Summer 2010 vs. 2011

I lost part of this post I started to write tonight and now I can't go back and redo it, so below is part of the original post and the cliff notes "start of the post"

We want a good summer, last summer sucked with all the hospital stays, tests, and surgery. We even were thinking about a family vacation outside of the chicago area, I never pulled the trigger my gut wouldn't let me.

With good reason it appears.

Thursday June 2nd - last day of school, a wonderful day, a happy day.

Friday June 3rd - the first day of Summer. We spent it at Children's Memorial Hospital.

Signs of shunt malfunction Thursday late at night, up most of the night, at ER by 1pm Friday. Imaging by 3pm.

Cameron now hates MRIs, cried hysterically during our April one, it was awful tears and convulsing.

Friday in anticipation I spent much our time waiting preparing him for the MRI. This would unfortunately be a case where no amount of preparation would help.

They wheeled us into the sub basement of the hospital, typically I will wait outside the basement machine (not the others, don't ask me why), but this time I told them I'd need to be in the machine with him due to recent issues. As soon as we got down the hallway Cameron saw the MRI machine and he flew into hysterics. It was terrible. By the time we got him into the tube he was at least no longer convulsing in tears so we could get the images, but I HATE this for him.

We returned to the ER room and he slipped back into a deep sleep. The resident comes in to report "Actually his ventricles look smaller!"

I get it she doesn't know our history and only knows that when dealing with Hydrocephalus you are looking to see if the ventricles are enlarged from the most recent films. She's almost excited by this prospect. Sorry to bring you down, but actually small ventricles aren't good for Cameron and this is not good news at all.

She was paged about 3 times in the 3 minutes we spent together, I sent her off to deal with the pages and come back with the attending so we can talk history and what this really means.

The full neurosurgery team returned in about an hour and I saw the images, not what I wanted to see, there is a significant change from two months ago...but we all agreed immediate surgery was not appropriate and we happily trotted back home with pretzels in hand.

So for the last 4 days I've been researching, as usual Cameron doesn't fit into the typical box of Hydrocephalus, and it requires me to advocate for him making sure his medical team is looking outside of this box. A great game of phone tag was played for two days straight with his neurosurgeon and finally tonight we talked. You'd think I'd feel some relief now that we have a plan, but I don't. I feel worse, I feel stuck, I feel we are starting the hell that was last summer all over again, I feel like I want to cry.

We're going to do another MRI, likely tomorrow. We talked about another surgery if the symptoms return. I shared my concerns about not wanting to repeat last summer, the Dr. appreciates my being proactive but made it clear that there is just no way to ever know what's going to happen and trying to figure him out is not easy.

Maybe I feel the most dread about having to take him for another MRI that he hates so much so soon after the last one.

So it starts again, listening with one ear open at night for sounds of distress, wondering if tomorrow is the day he'll wake up miserable and I'll lose the happy Cameron. I kept my CMH bag packed once we returned home last Friday, ready to go at a moments notice, the green bowl has been unearthed.

We've felt fortunate for the last hospital free 4 months, we were overjoyed with a "good" routine MRI report in April, and we've been grateful that the IEP season did not also bring us any health concerns (I can multi-task like a machine, but not when it involves my son's health).

I have do have faith we'll get to the bottom of this, but I sure wish I could snap my fingers and make it stop.

Education Woes

I've spent the better part of the last 3 months digging in deep to get Cameron an appropriate education in our school district.

I've learned a lot, it was as if I was back in college, although this time I was studying for the exam of a lifetime. I could write about 1,000 words about this process and how frustrating, sad, and maddening it was and it doesn't have to be this way, but I don't have much left in me to put pen to paper in this case.

Hopefully over the summer I can devote some time to a post that would be helpful to other parents of children with IEPs (Individualized Education Plans). We'll see, it's on my to do list.

To sum it up we are taking the leap and sending Cameron to Kindergarten next year, with a 1:1 (individual aide), while I don't want him to come to rely on someone it's best for this particular transition. I have hopes that after this first year in the general education setting we can move away from this set up. He's going to be receiving a TON of resource minutes (OT, PT, ST, Social Work, Special Education Consult), part of me wonders how they will effectively fit all those minutes in a half day program!?!

There were many, many people I spoke with about this process family, friends, friends of friends and more so I want to take a moment and say thank you to all of you who listened, gave me advice, called attorneys and more to help us work through this difficult transition.

Yet another reminder of how fortunate we are to have the sounding board we do. Thank you all.

Of course it also reminds me of the long and winding road we are on, it's not easy in any area.

In closing I'd say you can pretty much count on my being "absent" from March-May most every year, it's affectionately referred to as IEP season for us special needs parents, not my favorite time of year to say the least.

For now it's summer, Matt and I took a collective deep breath last week and have banished all IEP talk for a few months, that is, until September when school starts...

Happy Summer. Some Light Reading over the past few months...

5 years old!

Cameron turned 5 two weeks ago, hard to believe that little teeny tiny baby is now a 5 year old. He's come so far, defied the odds, taught us more life lessons in 5 years than some will learn in a lifetime. He's a hero, a fighter, and the sweetest and happiest little man, at least in my opinion.

Cameron enjoyed his first birthday party with all his school friends, he was beyond excited and really enjoyed the day. We figured it was time for a "friends" party as he asked me two months ago after attending another school birthday party:

"How come all my friends from school were at Luke's party?, I thought birthday parties were where a bunch of adults come over?"

He may as well have added and drink copious amounts of wine! Ha ha!

So off to the Brown Cow Ice Cream Parlor we headed with 18 5 year olds and it was a huge success.

--- yes, his name is spelled wrong, but who cares!

In the past two weeks since Cameron turned 5 I've learned this is a milestone from these two simple facts:

1) Cameron asked us if he could take a shower!?!? really????

2) Cameron graduated from his Early Childhood Education Class and next year is going to, wait for it .... KINDERGARTEN. For a former 32 weeker, with as many challenges as he's faced to actually be going to Kindergarten on time, well it's HUGE and it's been no small feat to get him to a place where we feel ok with this placement. More on this topic later, and is in large part why I have not posted regularly to the blog.

Happy Birthday Cameron you are an inspiration to many, we love you!!!