MATTHEW out of hospital....the SCARE of my life...

hola everyone! i hope everyone is doing great....well, after 14 months of no seizures and 18 months without those BIG seizures, matthew had another sz on THURSDAY out of the blue.......and BLUE is the key word here...here is what happened...


well, matthew was taking a nap and the nurse had been watching....about 30 mins in, i checked on him to ask how his heartrate was....it had recently been in the 50's and i was just concerned with what it would be...she said it was 89 and that he had woken up...i told her just to let him chill out in his crib for a bit to see if he would go back to sleep....well, i went back in about 15 mins to check on him and he was still awake so i just walked in and said "let's go ahead and take him out, he is not going to back to sleep" so i raised his bed and i was just talking to him and he was just laying there actually looking steadily at the nurse....i tried to pull his gaze away and he would but then come right back....so i asked her if he had been staring when he woke up or if he had had a SZ...she said that no, he had been acting fine and had been smiling and such before i walked in to get him....i just felt LIKE SOMETHING was not RIGHT!!! it was really bugging me but i just KNEW that something didn't feel right....so i kept bugging him and trying to get him to interact with us...he WAS but just not very well...kinda lethargic like...sooo, i just kept on him...i turned on his DVD player and put on his FAVORITE show which he USUALLY goes crazy for and just gave it a quick stare and that was it....i told the nurse SOMETHING was up...i took his temperature, checked his shirt to make sure he had had a sz before (he drools ALOT when he does) AND just overall checked his limbs....we changed his G-TUBE and i was just messing with him and giving lots of love....i was concernec enough that i didn't want to leave him like i usually do to go finish up alex's homeschool....so then i said, 'i am going to cut your nails" something he HATES to do....so i get my clippers and he is just looking at me...then i start to clip and nothing...as i got to his second nail, i SAW HIM GET BLUE AROUND THE MOUTH AND FOREHEAD and i told the nurse, ' did you see that? pull on his pulse ox QUICK" AND she didn't know what was happening and then he did it again and i told her "get me the oxygen NOW" he is not breathing and he is BLUE!!!!" and as she did it, i HONESTLY with ALL MY HEART thought that he was having a HEART ATTACK...he had NEVER had this happen to him, turning blue like that i didn't know WHAT WAS GOING ON!! i had the HORRIBLE THOUGHT that i was going to have to do CPR on him because i thought he was DYING!!!! it was probably one of the SCARIEST time in my life....i had thoughts about THANK GOD WE DID MAKE -A-WISH....anyway, i started to blow on matthew trying to get him to breath and he was just LIFELESS and BLUE so, i got him down and kept trying to stimulate him while HURRYING the NURSE to QUICKLY get the oxygen...i called to my WONDERFUL SON, alex and told him to get me the phone because i had to call 911....he was sooo awesome!! i called 911 and i told him i did NOT know what was going on only that my son had stopped breathing and was blue and because YES had sz disorder but this was NOTHING like i had ever experienced.....he dropped his sats to 50...it was soooooo scary!!! EMS and FIRE got there within 5 mins and i administered his DIASTAT because he had finally started to have a sz the "normal' way...he was just lifeless....i told the parametics that they needed to bag him because i was sure his CO2 levels were high cause he was not effectivly breathing even though his O2 sats were 100%....they bearly heard any breath sounds....so off we went to ambulance and they started to bag him and we went CODE 3 to the hospital...the ended up INTUBATING him and they gave him 4 doses of ADIVAN (anti convulant) cause he was still szing and they did a cat scan and blood work....we ended up in PICU 7....later that evening, he SELF EXTUBATED himself :) everyone remembers when he did it both times as a BABY!!! :)

well, THANK YOU GOD, he is doing well....we came home today after less than 24 hours there....we increased one of his sz meds and as of RIGHT NOW he has been awake for 22 HOURS because he can't sleep!! i found out it is a side effect of all the MEDS he had and it will wear off soon...he is trying soooo hard to sleep but he just can't..he keeps crying and being upset...

well, THANK YOU ALL for the thoughts and prayers....we are now AGAIN on HIGH ALERT... we got REAL COMFY with him not having ANYTHING in over a year....i am very happy it didn't happen in FLORIDA and of course, matthew had to pick the PERFECT time when no one should be NEAR the hospital with all this FLU EPI!!

ANYWAY, please just pray that he SLEEPS COMFY tonight and these sz go away AGAIN!!

GOD BLESS....