A year later

(this is a long post but one I have been meaning to write for a long time)

One year and a day ago I stayed home with both boys because Coleman had been throwing up and having (sorry TMI) diarrhea for more than a day. Coleman seemed a little perkier and still had just a low grade fever but he actually wanted to eat, so I made something I thought his stomach could handle. 

I was in the kitchen making my breakfast when it was oddly quiet so I asked Caden what Coleman was doing. The words that he said didn't make sense "he is being silly and falling out of his chair."  I ran to see and what I found made my stomach drop. Coleman was literally hanging out of his booster seat (only because he did the buckle) with no movement.  I lifted his body up and his eyes were rolled back and it sounded like he was gasping for air.  Because he was eating I assumed he was choking and tried to perform the Heimlich maneuver. I was panicking and not remembering my CPR training.  I could not figure out how this was ever going to work because his body was limp.  I finally laid him on the floor and something in my brain clicked. I remembered to check his mouth for food and discovered his mouth was clenched shut and then quickly realized what was really happening. Coleman was having a seizure. I have watched videos and talked about them frequently because my job as a special education teacher. But I didn't recognize it at first (i think the fact he was eating threw me off).

It was a Grand Mal that lasted at least 2 minutes from when I found him but OH.MY GOD it felt like an eternity had gone by. His little body twitched and he gasped and sputtered for air.  I immediately called my husband and then called my school nurse. I don't know I didn't think to call 911.  The seizure had stopped but Coleman wasn't really 'coming out of it.'  He cried for me once and grunted a bit but overall was acting like he was asleep. 

David got home and tried to wake him...same response: cries out, says momma and then goes quiet and limp. My school nurse is the sweetest women and thank goodness for her ability to talk to me do calmly. She calmly told me that we should take him to the ER.  Caden luckily didn't take the moment to fight with us and got his shoes and coat.

At the ER they checked him out and said he seemed okay and it was normal for him to be so groggy.  He was waking a little more but was irritable.  They wanted to do blood work and a chest x-ray to make sure he hadn't aspirated food.  During the blood draw he screamed the most horrible wretched scream and went into another grand mal seizure in my arms.  I know they aren't likely to cause damage but to watch it happen on my little boy...who has NO KNOWN reason to have one was scary. Then nurses rushed in and there were probably 6 nurses rushing around us, getting oxygen on him, and calling for meds.  It was a stronger seizure and it lasted about 3 minutes.  Luckily Caden and David had gone to find a snack. We had called our wonderful friends to come get Caden for us. Before he left he wanted to say by to Coleman and me.  We had to explain that he had a special mask to help him breath and some tubes to give him medicine.  How scary could that be for a 3 year old to see?  He was sweet and kissed him on his head.  

Due to the second seizure we were transferred, in a really fancy ambulance to children's mercy in KC.  I went alone with him because David was going to bring our car and get us a few things from the house.  (all the while my good friend was upstairs in labor and delivery about to have an emergency c-section. Her little boy was born that day and marks my memory forever.  I was so worried about my son snd about my friend and her baby!!!!)

Coleman was miserable when he started to wake up....apparently the side effect of Valium.  it was horrible. He had a third seizure that evening this time on David's lap after screaming when I left the room.  Another Grand Mal that lasted about 2 minutes. They gave him another anti-seizure medication.

finally wanting to play

We stayed there for 2.5 days.   (partly due to a snow storm....there were not all staff available for non-emergency cases)  He had an EEG and the MRI was canceled due to normal EEG results.  He had some residual side effects from the seizures and medication. His balance was really off and walking like a baby who had just learned to walk. It scared me but the Dr. assured me it was likely due to brain swelling from having 3 major seizures.  We were SO glad to be discharged. The staff was great but the accommodations for sleeping in the room with him were less than desirable. They had no answer other than Febrile Seizures, even though he never had a documented fever of more than 99.5 throughout any of this. He lost a lot of weight those couple days but he has caught back up.

Caden had a little adventure and got to sleep at our friends house those 2 nights.  We felt horrible since he had never had a sleep over..with anyone but we are so grateful for those friends as it made Caden comfortable.  

He was so excited for this! Ride to the EEG.

fancy hat for EEG

Hilarious Hair post EEG 

Finally eating again.

all his bandaids...tough guy

Here we are a year later and the kid is perfect.....he is a chatty kid, energetic, trying my patience at every turn.  The wobbly legs took about 2 weeks to dissipate but it did. He runs a higher risk for future seizures but has not had any since that day.  I still get nervous when he has a fever but not as bad as before.  we have moved on and life returned to normal.