Wishes DO come true...our FAMILY in FLORIDA!! :)

Wednesday, June 21, 2006


ok, the day started off GREAT!! our plans were to go do some "memory lane" type of stuff. we drove about 2 hours away from PLATTE CITY to MARCELINE, MO...this is where WALT DISNEY was born and raised! this is also where my mil grew up in. my hubby use to spend their summers out there. it is BEAUTIFUL little town. their old home is very small...they lived on 14 acres of land with a COAL MINE on it!! in the back, there are actually HILLS of of OLD coal shaft rocks that they pulled from the earth....very nice! i will defiently post some pics VERY SOON .....anyway, we were there for a bit and we started on our way to MOBERLY, MO to visit the graves of my mil mom and is about an HOUR plus away thru 2 lane roads where there is NOTHING, all is going wellin my world, and both my boys are asleep. james and i are watching a movie, yes while driving. well, i had been looking up at matthew periodically to make sure he is ok...remember, his seizures start during sleep, when i noticed he was SUDDENLY BUBBLING from the about scary! i told james, PULL OVER, i think matthew is having a seizure!!! so we did in the middle of NOWHERE!!! i grab matthew and bring him to the front...james is getting his meds, oxygen and pulse ox...well, he IS having a seizure BUT it was different...he was actually WITH us but still seizing! and then he stopped for about 5 mins and then he started AGAIN with the BIG seizure! so, i decide to take him to the back of the truck and we lay him down and gave him his DIASTAT...our family came back to check on us because we were no longer behind them and we asked where the nearest doctor/hospital was....OVER AN HOUR AWAY!! but they told us there was a clinic in the next town about 8 miles away...and we were is what i SHOULD have done...i should have just dialed 911 and let them come to US bhut i guess we just panicked and wanted to get him SOMEWHERE! so when we get to the clinic THEY ARE CLOSED ON WED!!!! talk about REALLY panicing now! we stopped someone and they directed us to an AMBULANCE company...they were pretty good and took him right away and put him in an ambulance...they had to call in AIRLIFE because we were an HOUR away from the hospital and matthew was STILL seizing. it has now been over 40 mins of seizing! because the helicopter was over 30 mins away, they decided to drive to moberly and meet the copter we are off!~
they give matthew some MORE valium and then i told them that he can STOP breathing and he DID!!!! YEP, he did. so they had to BAG him for over 4 mins to get hip breathing...very scary! thru the whole thing, dad is following in the car!!! anyway, we get there and they transfer him to the 'copter and he is off.
Getting ready for ....

this is were i will FOREVER REGRET not hanging to the SIDE of the 'copter since i couldn't be inside the 'copter!! HONESTLY, i will FOREVER regret that i did not do little boy was ALL BY HIMSELF going to a hospital that did not know him and mommy was not with him....i am just DEVESTATED by these took us over 30 mins to get to the hospital in columbia....when i got there, as i was walking into the room, WITH EVERY CONFIDENCE THAT HE WAS FINALLY WHERE HE NEEDED TO BE (a hospital), i walk in to one of my WORST beautiful son, who has already been thru sooooo much, is LAYING there with NO DOCTORS in sight and was STRUGGLING for breath because he was sooooooooo congested. the nurse was just standing there writing in his chart. i walk in and IMMEDIATELY started suctioning him and pulling from his THICK JUNK out of his nose and throat. i ask the nurse, "has the doctor been in to see him" and she tells me "NO, NOT YET" i ask her, "what time did matthew arrive", she said "1602", i look up at the clock and it is 1630!! i was soooooo upset and i ask her to GET a doctor here!! my son, he is lying there, UNRESPONSIVE to me, with HALF OPEN EYES, GURGLING, totally CONGESTED, on 10 liters of oxygen, and having seized for OVER ONE HOUR.............i couldn't believe this happened to my baby! so the dr walks in and says "yes?" i said, nobody has checked him out!!!! i lifted up his eyes and HE IS STILL SIEZING!!!!!!!!! ok, WHAT THE !#$%%^^%$$# IS GOING ON HERE?!?!?!? he looks into his eyes and says, YEP, he is, they TOLD ME he had STOPPED?!?! ok, did NOBODY check his eyes out?!?!?!?!?!?!?!?!?!??!?!?!?!?!!?!? so the dr turns around and he left to go order some more adivant (?) but then a couple of minutes later, matthew stops and goes to sleep (matthew).....i am sooooo upset! and still i am asking, " what are the numbers for the blood gas?" they are like, we didn't take one. so i tell them, 'he ALWAYS get's one because he has chronic lung disease and he may look fine but is not..." NOTHING...ANYWAY...that ER was HORRIBLE!!!

fastforward.......we FINALLY got a x-ray on his chest, and CT scan and everything... they did not even do a BLOOD GAS even though i asked for one after explaining what he does etc............we were transfered up to PICU there and he did REALLY WELL. picu was GREAT! :) but man....

a neuroloigst came to see us and was very UPSET at the treatment of matthew. he was WONDERFUL and ordered a dose of phenobarbital....he also talked to our dr here in san antonio..

anyway, they were really nice at the picu and took GREAT care of matthew. i spent the night with matthew and alex and james went to the ronald mcdonald house for the, i miss home!!