expect the unexpected

Today was supposed to be Wyatt’s long awaited electro physiologist appointment to finally get connected with someone who can better manage the cardiac risk factors associated with CCHS (Congenital Central Hypoventilation Syndrome). Well, as we were getting ready in the morning to head out the door, Wyatt, in true Wyatt fashion, decided he had other plans. Making his parents age by another ten years apparently was on the memo he forgot to send us. Mr. Crankypants gave a typical two year old response to something he didn’t like by throwing a tantrum, which in his case still means he held his breath until he turned blue and passed out. Sadly in our family that has become such a daily routine that we don’t even think twice about and so we went through the motions of cranking up the O2 and watching the volumes on his ventilator as he started to recover. As his skin turned pink again, he then started seizing. He’s done that occasionally when he managed to hold his breath just long enough, so it wasn’t anything too unusual. While he does his lovely breath holding spells anywhere from 1-15 times a day, seizures after the fact typically only occur maybe once a month and only last 2 minutes at the most. Well, expect the unexpected because when you throw in the factor of having a cold, things can turn ugly very fast. His seizure didn’t stop. To make matters worse, when he started his breath holding episode, he had a mouth full of food. Most of it I was able to get out right away but when he started seizing more food appeared in his mouth. Being at risk to now aspirate which would make a bad situation even worse, you just react out of instinct. With nothing handy right around me to hold his mouth open, I went for it and tried to get the last bit of food out when Wyatt happened to open up on his own. Unlucky for me, just like an alligator, as soon as he felt my finger in his mouth he clamped down hard. Thankfully, my finger is still intact with just some bruising, broken skin by the nail bed and what appears to be a cracked finger nail underneath. I screamed out of pain but at least the kid didn’t aspirate, I guess that was the priority, life over limp so to speak. 15minutes of seizure activity had already passed at that point and we had no choice but to load everyone in the car and head to the hospital. Calling the ambulance wasn’t really an option because we knew per protocol they’d have to take him off the vent during the ride and would take him to the nearest hospital where they are not equipped to handle the complexity of Wyatt’s care. With the Co2 Monitor, Pulse Oximeter and a cranked up O2 tank all hooked up, we jumped in the car. I have to mention here that our other three kids are absolutely amazing and went into full emergency mode without hesitation, helping load everything and everyone up as quickly as possible, and sadly, as if they had practiced it hundreds of times before in the last couple of years. Speeding limits were none existent driving to the hospital and not much explanation was needed to be escorted right into the trauma room at the ER. There’s just something about running in with a toddler on a vent and O2 tank that no one questions your urgency. Long story short, 1.5 hours of seizing were finally stopped after several attempts of getting a line into a stiff kid and then administering two doses of ativan which then knocked him out cold. After being moved upstairs to the PICU (Pediatric Intensive Care Unit) and a discussion with Neurology, we all came to the same conclusion that we will do yet another EEG (number 6 since birth) just to rule out an actual underlying seizure disorder by checking for residual signs and hoping to catch him during another breath holding episode sometime during the night once the Ativan wears off. However, we are all convinced that there is no seizure disorder but instead the prolonged lower levels of oxygenation during his breath holding episodes are in fact the reason for the occasional seizure activity afterward. The assumptions at this point is that today’s seizure was so intense because Wyatt has a cold and that combined with the long breath holding episode lowered his threshold for seizure activity. If this EEG confirms this hypothesis, then we will be discharged with a suppository seizure medication to be administered at home only in such instances as today. Overall, that is really the only “positive” outcome here because we have Ativan at home already for really bad days but it’s an oral medication that we cannot give him while in the middle of a seizure. A suppository would be the best option to stop a seizure and avoid another hospitalization.

In plain English what it comes down to is this. When Wyatt decides to throw a tantrum and hold his breath, turn blue and pass out, we always run the risk of today’s drama repeating itself. In other words, he’s causing his own downfall and there is nothing we can do to prevent it. I would love to say “oh poor baby, this genetic disorder is really hard on you” but what really came to my mind today was “you little shit”. Does CCHS suck? Yes, absolutely. Is it his fault or anyone else’s that he has to live with it? No, no one wishes for this, it simply is what it is. But the tantrum that started this mess today was over the simple fact that I told him he could not have another bite of food until he finished what was already in his mouth. Over that 2year olds frustration I almost got my finger tip bitten off to save his sorry ass and three other innocent kids have been traumatized once again. It was my middle finger, too. Wouldn’t that have been the icing on the freaking cake? I am so angry at him and the whole idea that no matter what genius parenting technique we come up with, it’s a no win situation. If we give in, he gets what he wants and only learns to manipulate people. If we apply tough love and let him know that he can’t always get what he wants when he wants it, then we have to do it with the thought that he might repeat today’s events completely intentional. That just simply sucks.

(And I swear if one more person at the hospital gives me the “He’s so cute.” line to try to make me feel better, I’m going to scream. There is nothing cute about a kid who has full control of everyone around him by threatening his own life if they don’t do as he demands.)

So, here's to my favorite song regarding Wyatt: Pink - True Love

http://www.youtube.com/watch?v=zsmUOdmm02A

"Sometimes I hate every single stupid word you say
Sometimes I wanna slap you in your whole face
There's no one quite like you
You push all my buttons down
I know life would suck without you

At the same time, I wanna hug you
I wanna wrap my hands around your neck
You're an asshole but I love you
And you make me so mad I ask myself
Why I'm still here, or where could I go
You're the only love I've ever known
But I hate you, I really hate you,
So much, I think it must be

True love, true love
It must be true love
Nothing else can break my heart like
True love, true love,
It must be true love
No one else can break my heart like you..."