Nerves



Yup - this about sums it up.  My stomach is in knots, I've had a headache for four days, I can't think straight, and I crashed my van into a pole yesterday.......(I'll save that for another post).
Tomorrow, the best-of-the-best surgical minds will come together to try and create a functioning shunt system for my little Noodle. 

A month or so ago, we had a lot of reasons to believe we'd never make it to this point.  We were "prepared" for the fact that it might prove to be impossible, that she would not survive.  We have tried to live day-to-day and not focus on the end of the journey, whatever 'the end' might be.

Now, here we are - at this pivotal moment.  It feels like there is so much riding on this one surgery; probably because there is. There is no room for error.  She cannot withstand more malfunctions, additional surgeries, more infections, more insult to her brain.  I have no control over this situation and I hate it!  Tomorrow, the OR team will see a side of me that they don't usually see.  I usually hold it together when I leave her (at least until I'm alone).  We have our routine of singing songs until she's asleep.  I am strong and optimistic.  Hell, after 46 surgeries, 46 goodbye kisses, 46 times walking out, 46 times looking back and saying "take care of my girl;" I have to be, right?  Tomorrow - I will cry like a baby.  I will have a very hard time walking out, leaving her behind.

Noodle

Where do I begin. I have started this post no less than ten times and in my exhausted state, quit each time. Partly, I simply can't accurately recall the exact events of the past several months, but mostly, I just plain don't have the energy or desire to lay it all out and relive it.  Doing that means I have to face it - again - and that it makes it real. 

Reality sucks! 

Sometimes I just want butterflies and rainbows and the last three months have been pretty dark. 

In mid-July, we found ourselves in and out of the clinics and ended up visiting our friends over at MRI and Ultrasound for a suspected shunt malfunction.  MRI confirmed a slight dilation of one of Miss Noodle's ventricles so her neurosurgeon opted to revise her shunts.  The revision went fine, but recovery did not.  She came out of surgery very rough.  Hours passed and she did not improve.  We transferred to the PICU, she was administered some sedation for a CT scan and shortly after we returned to the PICU, she suffered respiratory arrest.  Prior to the arrest, she had been awake and comfortable.  The 20 minutes that followed can only be described as a living nightmare.  This is the second time in the past 3 years that I stood by and watched as a team of no less than 20 people fought to save my daughter's life.  In those moments, I would've sold my soul to the devil to ensure that she would survive.  Marissa was intubated and stabilized on a ventilator before I, myself, began to breathe again.

In the days that followed, no one really was able to come up with a great reason for her arrest.  She was weaned off the vent, extubated and continued to do quite well.  We went home about a week later.

Unfortunately, we returned just a few days later and Marissa was diagnosed with a shunt infection.  Her shunts were externalized for two weeks, during which time she was treated with IV antibiotics and then shunts were internalized.  We went home again, only to return a couple of days later when she leaked CSF out of her incision sites.  The leaks were controlled, shunts revised, spent another week - went home.

Are you noting a trend at all?

A few days later, Marissa went completely blind - yup - malfunction number.....who am I kidding.....I don't know.  This was a Sunday and she wound up in surgery late Sunday night.  Dr. B came and met me after surgery, as he always does, but this time, things were different.  Instead of coming out and telling me everything went great, he sat down quietly and looked utterly defeated.  I swallowed my heart and waited.  I know there are so many parents out there who have had this experience.  They've had "the talk" with their kids' doctors.  They've sat there and listened, stared blankly while statistics were recited and doctors told them that the odds were stacked against them.  They've listened to phrases like "there's nothing else we can do" & "I don't know how much she can take."  I know Marissa is lucky.  Not a day goes by that I don't thank God for the fact that she is still here and still strong.  She shouldn't be and I know that.  she shouldn't be able to smile and laugh and eat and roll over.  Every little thing she does, every minute we have with her is truly a gift.  That said, for some reason, even though I watched her suffer a near-fatal hemorrhage two years ago and respiratory arrest just a couple months ago, I have never really allowed myself to believe that the day would come when I would be faced with her mortality.  Now, here I was at midnight on a Sunday, in a dark waiting room, by myself, being slapped in the face with it.

So, what's a Mom to do?  I pulled up my big girl pants, dried my eyes, and vowed to fight like hell.  That's what we've always done and we weren't going to stop now.  Noodle came through that surgery, did great, did not regain her vision, but followed a healing course. We were discharged - again.

Fast forward a couple of days.  I found my sweet Noodle with a big 'ol goose-egg on the back of her head (pocket of CSF) and took her to see Dr. B once again.  He tapped her shunts, ordered an MRI and I expected to be admitted. Her pressures were good, MRI looked okay so we went home. 

Two days later she spiked a fever, started vomiting and we headed to the Emergency Room shunt kid purgatory.  I avoid it at all costs, but this time, we had to go.  I have NEVER had such a horrifying experience in.my.life.  For the next 14 hours, we saw no fewer than 80 different people who had 80 different opinions, none of which included a shunt malfunction, shunt infection, infected gall bladder, or septicemia (all my dumb ideas).  I was repeatedly told she had a simple gastroenteritis (aka: the stomach flu).  We were treated like crap, refused pain medication, and my blood boiled hotter and hotter as the clock ticked.  I told off way too many doctors and residents that day.  Despite what people probably believe, I don't like being ugly & mean, but cross me too many times, belittle me and make my kid suffer needlessly and I will turn it on.  Eventually, through a small miracle (and after some irate phone calls) we ended up in the PICU.  Eventually, she got every test I wanted her to have from the minute we walked in early that morning.  Eventually, she was diagnosed with:  Shunt malfunction, shunt infection, and septicemia. But....I'm just a stupid parent!  Oh, and a week later, her infected gall bladder was removed, too. 

I digress.

Shunt infection becomes meningitis....meningitis morphs into ventricultis and cerebritis with a nasty abscess in the left temporal horn.  Following the trip to the OR where the abscess was discovered Dr. B came in for another heart-to-heart.  This one was long and much harder.  I was more ready, though, or so I thought.  There are so many things I appreciate about this man - I've shared before how much we love him HERE.  I appreciate his honesty, compassion and the time he always seems to have to give to us even though I know he is being pulled in a million directions all the time.  I so appreciate those things about him.  We talked at length about decisions and when to make them and that it's okay not to make any right now.  We talked about her prognosis, which was and continues to be guarded at best.  It is statistically unlikely that she will grow to be a young adult.  It is statistically likely that because of the insult her brain has suffered, she could die from a seizure, a fever, another shunt malfunction, a bump on the head or any other myriad of things that we simply cannot predict.  How does a mother who loves her child more than anything, begin to process those words, those thoughts, those feelings?  I can't help but think about finding her lifeless in her crib some morning, about having to tell her brothers and sister that she's gone, about having to call family members, about planning her funeral, about having to go on living without her.  I don't know how parents survive the loss of a child - I really don't. 

Today, we are 12 weeks into this "event."  There is no end in sight.  Noodle remains externalized, but in fairly good spirits, for which we are thankful.  Other than her eyes, she has not appeared to have suffered permanent losses as of yet, which is quite astounding considering the extent of her infection, amount of surgical intervention she's had and the seizure activity she has suffered over the past three months.  She truly is a living, breathing miracle.

I will admit that I am struggling a little more each day.  I am tired - more tired than I've ever been.  I haven't slept more than a couple hours straight in 3 months.  I worry constantly - about Noodle, about the other kids, about how we're going to pay our bills, keep a roof over our head (living in a PICU is not cheap), my job, my marriage, whether everyone who's been lending a hand is going to get sick of doing so.......

I worry.  I can't help it.  My worrying won't change anything, won't help anything & I know that, but I'll do it anyway - it's who I am. 

Meanwhile, I wake up each day, fold up my vinyl couch, prepare for the barrage of doctors and residents who will start descending on our room & I take a few moments to look out the window at our gorgeous view and remind myself that we will face today and not worry about tomorrow.  It gets pretty lonely sometimes.  My heart hurts that my family is apart.  I miss my other kids something terrible and I long for the weekends when I get to see them again.  Then, the weekends come and I miss Noodle. Most days, I'm strong and optimistic and my sense of humor carries me through, but other days I feel like I could curl up in a ball in the closet and just cry. 

Who knows where this path will lead or when we will get there.  If you're ever in the neighborhood, stop on in - we'd love to see you!