The Broken Cookie

Growing up one of my favorite memories is eating Pepperidge Farm Chocolate Chip cookies with my grandfather, Baba, and my brother. I’d dig into the bag, and without fail every time pull out a broken cookie. Baba would say “Rory, you always get the broken cookie” not in a voice of pity, but in way that comforted me. As this scene repeated itself over the years I loved this moment, I felt good about the broken cookie, because it was always my broken cookie and it was my moment with my Grandfather.

I’ve personally let my guard down to maybe 3 people in my life, where the words just start spilling out of my mouth, and the truths nobody really wants to hear are spoken, about how it feels to be Cameron’s mom. It’s not just the fears, the therapy/medical grind & the constant worrying.

The real guard comes down when the sadness is spoken, where the tears eventually start overflowing and the person listening isn’t sure what to do. The answer is just listen, as hard as it may be, as much as you want to try and fix it, and in turn, fix me. This situation, and me, as a result are broken.

I’m ok with being broken, that’s part of life.

Sometimes you just need to let it all out, let your guard down and say this is me, this is who I am & this is how much my heart hurts for my child. The silver lining in all of this is that Cameron’s heart is not broken, he is not sad, I will carry that for him as long as he’ll let me.

It’s not often you will hear me sharing these thoughts, but I think it’s a vital part of being a parent to a special needs & medically fragile child. We need to be able to speak the truths of this life with someone we trust.

I hate roller coasters

I always have from a young age. And it appears the one we are riding is on full speed ahead these days with no signs of letting me off.

Every day is different, one day I am confident I can handle this all and the next I am falling apart. The littlest things can set me off into a tear filled spell. A photo of a friend getting married and the joy on her parents face when they first see their daughter on her wedding day. Good tears. The 8 year old child in the waiting room at RIC who can't even walk upright. Bad tears.

Today there have been many bad tears. We've been to 4 different specialists in the last 5 days.
- GI
- Orthopaedics
- Physiatry
- Neurorsurgery
- and then and hour long call with our pediatrican to review issues

GI put Cameron on a daily medicine in an effort to reduce the frequency of the CVS episodes, we had no issues last weekend. We do believe the trigger for an episode is excitement or stress, and I clarified with the GI Dr. if this was a psychological issue or a GI issue - answer: it's a migraine of the GI tract and is not psychological. Interesting, but the trigger seems to be related to what's going on around him.

This medicine will not cure CVS, but it should help, if it doesn't work we try another. Also increased the Zofran dose for during the episode so that we can ideally make him more comfortable. I am also working to see if there's any way I can get a home health nurse to administer IV fluids and the meds during an episode to reduce the length and severity of pain during the episode. This might be hard to pull off but we're going to try.

Orthopaedics and Physiatry were happy with Cameron - yeah!! Keeping the braces as is, and going to try and get him into some therapuetic horseback riding to strengthen his core.

Today was Nuerosurgery - I walked in thinking this would be a breeze. In reality it was not, as expected Dr. Bowman is not pleased about the development of CVS because of the shunt. She planned to do a full work up on him of tests, shunt tap and so forth. But after we talked it was decided this was not necessarry right now as I do believe we are dealing with CVS and not a shunt issue. There was talk about the size of his ventricles, they are getting smaller, based on what the NS team said in the hospital I believed this was a good thing. Bowman says "neither good or bad" just IS. Ok so we're non-committal, I don't like that, it makes me worry.

Ultimately she wants to be kept in the loop on the CVS episodes and anytime there is head pain we are to come to the hospital. She also squelched the ray of hope I have regarding shunt malfunctions. I was told by several while in the hospital: "the longer you go without a shunt malfunction/revision the less likely one is to occur" . Apparently this is NOT true. Sweet. Can happen any time, so the CVS episodes are going to be tense, as if they weren't already.

After a horrendous morning getting to this Dr. appt (yes, I got completely lost going to Arlington Heights - took me 1.5 hours!) we came home to learn my dad in the hospital for his heart, while all signs look to be ok, it's got me on the edge.

Our life these days is rough, really rough. And yet each time I walk into Children's I am reminded it could be worse, thank god it's not, because today I am done.

12 Hours and some change

That's how long it took for Cameron to get out of the episode. We started at 7:20am and ended at 7:40pm. Not really that long some might say, some others might say it's really not that bad he's just throwing up, my kids throw up, I throw up - yeah it's unpleasant but it ends.

And end it did, thank god. But I have to be honest it's the longest 12 hours of my life when it happens, I wonder with each passing moment are we getting better or worse? Will this time be different? Is he deyhydrated, of course he is, he hasn't drank or gone to the bathroom since 8pm the night before! But is he in a dangerous zone for deyhydration? I used a syringe to force gatorade into his mouth, he probably got a total of 2 tablespoons.

There is no way to describe how awful it is to watch your child clearly in so much pain, and so miserable with no relief for hours.

At 6:30pm I called our neighbors over, one is a nurse and the other a fireman, I just needed someone to tell me if he was too dehydrated. They said he's ok, but if he vomits more it's probably time for the hospital and IV fluids. They probably thought I was crazy, not knowing his history.

And no sooner than they walked out my door Cameron throws up, we decide to give him a little more time to see where this is going. 20 min later, throws up again and within 5 minutes of the most violent act of throwing up (keep in mind there is nothing to even get rid of) he stands up from the fetal position he has been in for the last 12 hours, opens his eyes and says out loud in the Cameron voice we all know and love "I want some apple juice, I need to go potty!" and trots off to the bathroom.

I swear it's like the exorcist left his body or something, seriously these episodes should be on video, to watch him come out of this one was just crazy.

For those who are counting, which may be just us - ha!, we are on episode number 7 since May 8th. I have been doing tons of research on CVS and after last night I spent two hours reading more articles, I just want to figure this out.

We are lucky his episodes are only 12-14 hours based on history, as some kids do this for days. I could not handle days, I just could not, a hospital stay would always be in order. So we're lucky on that count, so far.

I hope the GI doctor is ready for us Friday, part of me wants to call them ahead of time and say book two hours for us! One of my big questions is how can we prevent episodes, b/c the Zofran did not help abort the episode, so should we go to the hospital when he's in the episode to get him out faster? The list goes on.

We are going to make up the Saturday parade we missed in Riverside and pretend we live in Hinsdale for their parade tomorrow.... shh... don't tell anyone!
Today we took a train ride, something Connor has been begging us to do. It was nice to have a fun day!!

Stuck

It's a beautiful 4th of July weekend, truly beautiful. Cameron and I have been posted in our bed since 7am and with each passing hour he gets worse. The CVS has reared it's ugly head again.

We had a short lived episode about a week ago, headed off to Children's at 2am to get the blood work done and hopefully get him out of the episode fast. In typical Cameron fashion, he presented in the ED (emergency dept) to not be in a full blown episode, I told them as such, we did the blood work, got some Zofran and were home by 7am.

This week I spoke with the Dr's to determine if we needed to repeat the blood work b/c I wasn't sure now if it was really a true CVS episode. Who knows if it was...

What I do know is we are now in the middle of full blown episode and it sucks!

You just lay next to Cameron, try to get him comfortable and nothing works, he wriths around in pain, the nauseau is unbearable, and then finally when he throws up for a few moments you see he feels better and then he just collapses. If we're lucky he goes into a deep sleep for a little bit, that's easier to watch than the writhing around in bed.

So it's 1pm and he's thrown up 6 times. I am playing the game in my head - do we go to the ED to get fluids and some drugs to try and snap him out of the episode or play it out at home a little longer. I gave him zofran at 7am as I saw the episode approaching, and actually thought I had helped as he didn't actually throw up for an hour after that, but since then it's been downhill.

In the back of my head, I worry is this the time it's the shunt? I truly believe it's not, but every single time this happens we have to wonder. Even the Dr told me again this week to always remember that there is no way to know.

So this is our life now, instead of going to the Riverside parade today, loading up on candy, seeing all the fire trucks and Judy Barr Topinka(yep, that's right she's a Riverside resident!) Cameron is miserable and I am logging the episode, hovering over him waiting for the next round of vomit.

We see the GI doc in Clinic this coming Friday, I am hopeful we'll come up with a plan to prevent episodes.

It's times like these that remind me how different our lives our from many, we worry about Cameron most every moment, we walk around on eggshells, we try to work our therapy homework into each day, we fight with insurance, we fight with hospitals, we fight with doctors to not give our son any more radiation. We fight to have a typical July 4th surrounded by friends, instead we are lying in bed on this beautiful sunny day.


Here's hoping the episode passes soon.