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

Thursday, August 03, 2006


well, i think i jinxed matthew!!! :( matthew started to get a bit congested back on thursday (wow a week ago) and i started him on some over the counter meds...monday came around and i decided to take him to the drs just to be sure....he heard wheezing so we started him up on neb treatments and increase inhaled steroids....then i did it....i told the dr, "look, i don't want to be in the hospital this weekend because matthew has NEVER been to a party for big brother and i REALLY want him to be there!!" of course he said, don't tell me that!! but he wanted to see him on wed just to see what was happening to him by then. well, all was going as well as can be expected and on wed, when i went to put matthew down for his nap, it happened....HE HAD ANOTHER BIG SEIZURE!!!! yep, i was down stairs after having JUST put him down and i was on the phone with james. i have a VIDEO MONITOR (THANK GOD because i would NOT have known anything was wrong without it!) so i was downstairs watching him when i just KNEW that something was wrong, i ran upstair and BAMM!! he was drooling uncontrolably and seizing!!! i told james TIME IT! so we did...after 5 mins, i gave him his DIASTAT and then after another 4 mins i called EMS....of course james is at work and i look outside and there is NOBODY at our neighbors houses!!! so figure i will just have to follow over there. so EMS came in and they asked if i was ready and i said YES BUT I HAVE TO TAKE MY SON, and they said, "can't the lady downstair watch him?!" i was like, "WHAT?!?! WHO?!?!" it was my WONDERFUL neighbor who had just driven up and came over right away after seeing EMS!! anyway, i left and we went CODE 3 because his o2 sats were HORRIBLE and his CO2 readings where REALLY BAD....i told him that he likes to stop breathing when he seizes like we get there and he is STILL SEIZING and the team comes around him and start doing all the things they do sooooo AWESOME.....they start to bag him almost as soon as we get there because he has NO AIR MOVEMENT...they bagged him for like 20 mins and then the decided to do the BIPAP instead of intubating him and see how he did....he did OK but they were going to wait 15 more min and if he didn't start to breath on his own, they were going to intubate him.....well, he DID! :) but they kept him on the bipap for about 4 hours and then they took him off. he was SOOOOO CLOSE to putting him on the VENT....soooooo close! but THANK GOD they kept him like that on the bipap. they gave him FOUR doses of ADIVANT and some other seizure med while we were down at the ER. he also started seizing again after about an HOUR down in the er...poor kid. they were also FULL at PICU so they were going to move us to another HOSPITAL but then when they called to PICU to check on a bed they were told they were full but then they told them it was matthew and they said, HOLD ON....WE GOT ONE!! they moved us in with another pt for a bit until he left to another floor!!

anyway, so we are STILL in PICU. we got here at NOON YESTERDAY and today, after talking to this WONDERFUL new neurologist that works for matthews neurologist (marcy & jane, the one you told me about) DR. R. we are going to do a MRI today and see what happens. he gave a GREAT theory about what COULD be happening.. he said that matthew was in that 10% of epilepsy that show NORMAL EEGS all the time....he said that since matthew has had so many DIFFERENT drugs and he is STILL having them, he is getting LESS and LESS of a chance that drugs will do the trick. he said you have a 70% chance with the 1 st drug for it to work, and with each additional drug it like a 5% chance or something.....he said that matthew is getting to where they might not work for, he talked about the VAGAL STIMULATOR surgery...i said, well, if it needs to, and we have to, and it WORKS, we will! don't know what will happen with that! anyway, back to the theory....he said that matthew MAY have had a stroke/bleed but DEEP in his brain A LONG TIME AGO so that NOW when he is really starting to catch up and develope, (crawling, walking, standing, sitting), that RIGHT SIDE of his brain and where ever that stroke was, it is TRYING to fire up and get moving where it never had to before since he was sooooo behind that now, it is triggering these seizures! and it makes SENSE because his FIRST seizre like this was back in AUG 05, then he started having mini ones in JAN right before/after he started sitting and then he had a MAJOR one in MAY 06 again, and then after that he started to go from floor to sitting, then JUNE 06, another one and then he started to get into the crawl position RIGHT after that and now he is really working on crawling/standing/walking everything soooooo it makes sense that his little brain is working overtime and maybe in that specific area where it happened!! SOOOOO, this dr is going to do the MRI and see if he can see SOMETHING....GOD WILLING we can find out WHAT is causing them AND IF they can be we increased his meds AGAIN for the 3 or 4 th time in 2 months....poor baby! but he sure was a STINKER LAST NIGHT...he was WIDE AWAKE from midnight to 7am in the MORNING!!! and of course, mom was awake with him!!! i think i had 1 hour of sleep! and of course he wanted to PLAY and try to grab and take off his leads and iv's etc! STINKER!!! so now he is TIRED but he has his MRI later this afternoon and we will be here at least ONE MORE NIGHT....GOD WILLING that is all!

soooooo....any good THOUGHTS AND PRAYERS we will be THANKFUL FOR!! he still has an IV going and we are still in PICU but he is loving all the attention of the staff that is around him. he looks GREAT a little tired but hey, when you party hard for 7 hours in the wee morning, you HAVE to look like that! it is nice to see soooo many of our old pals from PICU!!

well, thanks again for any thoughts and prayers for matthew. HOPEFULLY, we will be home tomorrow at the VERY LATEST! just in time for my poss rootcanal and crown!! WWWOOOOOOHHHHHOOOOO!! not! :(

take care everyone and GOD BLESS...,

MOM'S BLOG with new pics of matthew & alex SWIMMING!


ALEX WEBPAGE will be updating REALLY SOON!!