Ah, remember that naïvely blissful post from yesterday, all fruity, fluffy and sweetness because it was Mother’s Day.  Who knew that a few hours after that post I’d be shuffling Sweet Pea into the back of an ambulance again.

The tantrum started as any other.  He got in trouble for attempting to pull out his wipes from the container and then kicked out of his room.  It started a full on seizure as well.  I called to dh to come upstairs and I turned him on his side while dh started to time it.  The girls were right there watching the entire thing with tears in their eyes.  They kept saying they didn’t want him to die.

At the 10 minute mark I had thought he stopped until I picked him up and his muscles were still jerking (lesser amount) and his eyes and eyebrows were following the same pattern.  He actually stopped breathing at points in there (which was horrible to watch).  At our first ER trip the pediatrician told us that the 10 minute mark was the limit for him and at that point we should come back in.  So we called 911 and I laid Sweet Pea on the couch and moved tables knowing that the paramedics would need some room.

Their arrival time was amazing because we live so close to the garage, they got to our house 2 minutes after the call was placed, so they got to witness the tail end of the seizure.  It is night and day when it finally passes.  He passed completely out, most likely from pure exhaustion (they say it’s as if he had run a full marathon).  They put him on oxygen and asked a ton of questions while getting everything ready for transport.

The ride was uneventful as he stabilized completely and slept most of the way.  But it took at least half the ride for him to become completely lucid again and actually seeing things (focusing as opposed to staring out).  We got to the hospital at about 7:30 and there were no beds so we were sent to the waiting room, a separate one from the main because they wanted to still be able to watch him.  He was awake and wanting to wander a bit (it’s a children’s hospital so it has lots of stuff to do for kids), but still really wobbly, weak I guess.

Dh arrived about 20 minutes after I did after dropping off my girls at my mom and dad’s house.  Can I just step aside here and say to the world how thankful I am that I have a mom and dad here, within a short distance that I can go to for help.  It’s amazing and I am utterly grateful for it.  Anyway.  We waited about an hour in the waiting room and then got into a room.

We waited in that little 10X10 room for 7 hours total.  Of course we weren’t always alone as we had RNs come in to check his vitals and such.  At around 1:30′ish we finally saw the dr.  By this time we had been irritable, frustrated, annoyed, yet had instantly swung the other way when we heard in the hallway that some children were in an accident (car) and one even had airbag burns (*sniff*).  At some point before we saw our dr we realized that we were truly blessed, even if we had to wait, because we still have unbelievable access to medical care that 75% of the world doesn’t have.  That and we were not nearly as much an emergency as those poor screaming kids (whose piercing wails broke my heart).

The dr was amazing, as most pediatricians are I’m sure.  He got a very detailed history of what’s been going on, and even made us explain exactly what his arms and legs were doing, what the motion was.  I think he was actually trying to distinguish between a child having a temper tantrum and a child having a seizure (which saddens me that he has to press to find this out because it probably means some jackass went in there to waste his time with a non-seizure event).  He checked his reflexes (quite poor still), his ears, his eyes.  Then he talked to us, amazingly fast actually, about the idea of breath withholding and how with infants like this, it’s not a temper type withholding like a spoiled 3 year old that takes a big breath in and then holds it, it’s a complete exhale and then inability to inhale.  He then went on to say that the seizure itself isn’t wholly surprising from a child withholding breath.  At this point my heart sunk a little.  I was truly hoping that I hadn’t wasted 6 hours of mine, and his, time, as well as traumatized everyone with an ambulance ride just to hear that it’s all perfectly normal.  He told me that had he still been having the short seizures, they wouldn’t be as concerned, but because of the duration of this one, he was quite concerned.  15 minutes is far too long.  He feels that there is an anomaly ‘A’ that is in his brain that without the breath holding wouldn’t be an issue, but with the breath holding becomes seizures.  It seems he is hoping to find out what exactly that anomaly ‘A’ is in his brain.

They took blood from his little itty-bitty arm (amazing if you ask me) and tested his iron levels as anemia can actually trigger the breath-withholding from what he had read.  He then said that even if the levels come back fairly normal, he would still like to put him on a mild dosage of iron as he had read that about trials in India, they were showing positive effects from this (India? The man reads!).  He filled out some referral forms and put a rush on it for a neurologist.  He also called to make sure that he could get us in reasonably soon and was reassured that we could and also put a rush on an EEG.  He warned us that going through the regular channels (like our 2 month away pediatrician appointment) would take 6-8 weeks for an EEG.

We were released at 3:20 in the morning with a very alert child, although still exhausted.  I think he wanted to keep his big eyes open to make sure none of those RNs were going to come back with another needle.  It took another 30 minutes in the car for him to crash again and we were in bed by 4:30am.  We were so exhausted.  Dh had caught a short catnap around midnight, but I can’t sleep in strange places so I stayed awake and read my Harry Potter watching my men sleep on a lounge chair.

This morning the man was awake at 9am, and fine.  Pleasant, hungry, and almost back to his normal 20 month-old self.  He was just tired and needed cuddles occasionally.

Knowing that I would not last the day without a snooze I begged my daughters to quietly watch a movie while I shut all phones off and had a sleep while the kid did.  Man it revived me, but I missed an important phone call.  Probably a good thing though because I would’ve been a blubbering mess.  When I get tired, I get super weepy and hearing a lady on the other end of the phone tell me I have an appointment at 10:45 am tomorrow morning for an EEG followed by a 1:00 pm appointment with the neurologist would’ve put me into a big puddle onto the floor.  I feel like we might be finally close to an answer.  I feel like that amazing doctor went that extra mile for me.

Tomorrow is a big day for us though.  I can’t say it’s going to be pleasant as we have to have him sleep deprived for the testing.  The poor little bugger has to have a second night of horrid sleep.  We must keep him up tonight until 10 and then wake him up at 4 am and keep him awake until the appointment.  Have you ever had a child so sleep deprived not fall asleep in the car ride to somewhere?  I have to have my poor daughters try and keep this boy awake, even if it means irritating him enough to cry.  I only hope it doesn’t send him into more convulsions.

I will post again tomorrow because I’m sure my brain will be entirely overwhelmed with information or such.  I am still keeping my appointment with the pediatrician here until I’m informed not to (which I’ll ask tomorrow).  If any positive thoughts, or prayers could be spared, would ya please?