Tuesday, April 2, 2013

Worst day ever so, Now What?

Tonight I'm posting from my sons bedside.  I am using this as an outlet to free my mind of the crazy it feels tonight.  I am all over the place with every emotion.  It all started yesterday at 4:30pm, the worst day ever.

   The afternoon was like it always seems to be, Jojo running around while the older kids constantly ask whats for dinner.  Some days it gets loud and a bit chaotic but its US. But yesterday I was more in tune with the kids, I took time away from cleaning and doing my daily stuff and I watched a movie with them.  At 430 I always start dinner or at least stand in the kitchen and ponder about it.  I got up from the movie as Jojo took off running like he usually does (he runs up and down the path to the front couches and slams into them for a sensory relief) I usually just let him do it and go about my business but, I decided to follow him and I thank my heavenly father I did.  as he slammed into the couch I was right there.  He looked up at me and made a crinkled nose kinda look and opened his mouth to cry.  I swooped him up and said, "oh this time you hurt yourself baby." He looked like he was trying to cry but no sound came out and then he just went completely limp.  His little head fell back his mouth open and his tongue sticking out. his color went pale and he felt clammy.  I screamed.  I slapped him.  I shook him.  I yelled to my teenager to call 911, I opened the front door and screamed with all my might, "Please HELP me." I then (after about 15 sec) realized Oh my gosh he isn't breathing I gotta do CPR, I blew three big breathes into my boys mouth and he gagged and started crying the 911 operator told me that was good keep him crying. But he kept rolling his eyes back and looking like he was going to sleep.  My neighbor heard me scream, she has a medical background and came to help me.  We stimulated him by talking, rubbing the soles of his feet, and he just was out of it.  Finally the entourage of firemen, police, and ambulance workers came.  By then he was just too calm.  Normally he would be stimming like crazy from having so many people around and especially strangers.  I kept telling them this was not his NORMAL, then I blurted out he has AUTISM he is usually a spaz!! I then saw the difference Jojo went from the kid that just stopped breathing to Ohhhh he has autism.  I was asked if I wanted him to go to the hospital?  Ummm heck yes I do! Okay do you want to drive him or an ambulance? Geez really people? I'm near panic attack mode and they want me to drive? Nope I got the ride by ambulance because what if? what if it happens while im driving? What would I do?

   In the ambulance I was told I should go to a closer hospital because I had three kids at home and who knows if they will keep you over night.  I was SO confused, never in this situation before and I said to the guy (who was at the back of the table I was on) can you please move over here so I can see you? He did and I looked him in the eye and I said, "if this were your son would you go to a closer hospital?" he said yes, so I agreed.

   Ugh, reliving this moment is as bad as the first paragraph. The hospital is a well known children's ER in my area.  They are usually really good, I have been there before with my other kids.  But yesterday the DR I got was unbelievable.  I can sum up what he did for my kid in one word, NOTHING!  Yes, you read that right, he did nothing.  As soon as he heard the word Autism he immediately looked at me and my son and said very demeaning, "these type of kids do this all the time, they hold their breathe till they pass out. that's what kids with autism do." I did the wha the what look and said Ohhh no NOT MY KID! Jojo has never held his breathe he loves air and he uses it to fill his lungs and scream, all day EVERY DAY! In fact he now chirps like a bird. Yup he loves to breathe.  This Dr told me then, "I have been a Dr for 45 years and im telling you he is fine, im not ordering any test because the radiation exposure doesn't warrant the test based on how he looks"  But Jojo was too freaking CALM.  Not my Jojo he is never this calm.  I pleaded with the Dr.  I told him I didn't feel right.  My family that was with me kinda agreed with the Dr, But this is MY kid I knew what had happened...He hit his head too friggin hard and it caused this episode! I even asked for him to at least check his eyes, you know the pupil check.  He said he has dark eyes I doubt I can see anything and went through the motions.  An hour later I left.  Yup this all happened at 430 and I was home by 830.  I came home in a daze, literally scared of my own child.  How do I sleep?  How do I not hold him forever? OMG how do I stop him from hitting his head again?

  I am fortunate to have a huge support system and I used it, I had prayer from everywhere and a special blessing for Jojo by members of my church.  I received one too for peace and comfort.  It worked I was calm through out the night and kept Jojo close while he slept.  But I just couldn't shake what happened.  I called his developmental pedi and his regular pediatrician and we got in first thing in the morning. When the Dr walked in I gave Jojo a fruit pop and told the Dr I needed him to listen to me fully about what had happened.  I replayed it all, I took pics of the couch he slammed into and I showed him.  He LISTENED and GUESS WHAT?  He looked at me and said "your son had a seizure, I can tell you that when a child has a syncope episode that follows a time of tiredness and just plain out of it that is not breathe holding!
I left feeling a bit more confident and super anxious to see the neurologist as soon as we could!