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

Monday, September 04, 2006

MATTHEW ISAIAH UPDATE...out of hospital...

hello everyon!!!first, THANK YOU SOOOOOOOOOO MUCH for all the PRAYERS and THOUGHTS for matthew isaiah and our means SOOOOOO MUCH to know that ya'll were and to read all the responses to my email and on my different forums....THANK YOU!!!!! i get really teary eyed when i read them!!! THANK YOU!

well, matthew got out of the hospital TODAY, yes LABOR DAY!!! he was in there for 3 days and 2 nights! matthew got out of PICU on sunday late afternoon and we were moved to a GREAT room on the 6th floor. this room was a FAMILY ROOM! very nice! we had already checked out of the HOTEL room on sunday morning right outside of houston and we were going to have to find another hotel somewhere on galveston and the prices there are PRETTY HIGH especially with the, although we were suppose to go to the 5TH floor (chronically ill floor) they moved us up to the 6th into a room where we could ALL STAY!!!! how nice was THAT?! so, we got to spend the night in the room together! very nice! and THANK GOD we were together again! it was nice because they even sent a nurse from the 5th floor to take care ol matthew and his doctors were all from the 5th floor! anyway, they basically took him off his seizure meds and put him on Fosphenytoin (Cerebyx®) via IV....they didn't restart his meds until sunday EVENING for his 9pm meds!!! i had to ask the dr since they were going to release us on monday, don't we need to start his home meds again, or whatever meds they were going to send us home with? but, they finally called our regular neuro and he advised them to go up on his ZONEGRAN to 300mg (we just went up a week ago on friday!!) and now he is at his MAX on ALL HIS MEDS!!! that is it, they can not go any higher so i am anxious to talk to the people on friday about the VNS! I JUST PRAY that is an answer to his seizures!!!!!! anyway, they also had him on an IV antibiotic up until this morning because they were afraid that he aspirated when he had his seizure....still not sure if he did or not but now he is junky because...........HE AND ALEX CAUGHT SOMETHING WHILE THEY WERE AT THE HOSPITAL!!!! yes, we just had to bring home a soulviner with us and of course pass it along to ME too!!! share and share alike i always say! alex sounds worst! he is coughing and has congested and has a running nose.....and OF COURSE, matthew could not just leave the hospital without causeing his own little STIR.....sunday night, when the nurse was taking his temp and getting his b/p he had a MAJOR FIT and was crying and holding his breath soooooooooooooooooooooooooooooooooooooooooooooo much that he basically PASSED OUT!!! i had him on my home pulse ox because it was time for sleep and the nurse came in and he just lost it and held his breath....he would NOT LET UP!! i threw water on him, blew on his face, sat him up, pounded on him NOTHING WORKED! IT SCARED THE ***** OUT OF ME, JAMES AND THE NURSE! his o2 sats went into the 40's-50's!!!! he finally wheezed a breath in when he just about passed out! he was sooooooooo blue!!! very scary! the nurse FREAKED OUT! i was really upset and told matthew, "you can't do that!!!" of course he was like WHATEVE MOM! the nurse actually called the drs in so they could check on him and talk to us! makeing sure this was "normal" i told them, unfortunatly YES but that was the first time he held it soooo long! anyway, i talked to the discharging doctorS (there was the faculty plus 3 other drs) and she was really excited to meet matthew. she had yet to meet him but she had heard alot about him and his family from the other drs! they were really impressed with how great he was and also how well behaved alex was!!! they really liked my history sheets on matthew (8 sheets about EVERYTHING matthew has gone thru!) and she was just really nice! she said that the other drs and nurses in PICU were just gushing about us.....AWWWWW....made me cry!! anyway, she said that he looked good and that she hoped that the VNS was the answer too. she agreed with us that we should NOT keep matthew at home!!! she said that was RIDICULOUS! we know what we need to do if something happens and she said that we did such a great job, she felt all would be well!! she said, IF IT HAPPENS AGAIN WHILE YOU ARE OUT, THER IS HELP NEARBY!!! JUST MEANS YOU HAVE TO MAKE A SIDE TRIP TO THE HOSPITAL!!!i soooo agree!!

and just to clarify something, it was someone we know that told us that we should stay home with him and not take him out....of course, that is NOT AN OPTION! nothing we do CAUSES him to have a seizure....they are going to happen whether we are AT HOME or OUT AND ABOUT!!! we just have to be prepared! we carry oxygen in the car and a pulse ox monitor on us and the DIASTAT....and when we travel, i carry a suction machine, oxygen, pulse ox and of course the DIASTAT....i will not be afraid to take my baby whereever. now of course, there are SOMEPLACES i don't take him too, where there are no facilities near by or where the temp is too hot etc....but to see matthew EXCITED and HAPPY, it is just such a BLESSING to see him ALIVE! i just won't keep him locked away at home! i do try to keep him away from germs as much as possible but you know, who wouldn't? anyway, we are a FAMILY that loves to be together......soooo, onto this week. i have to make an appt with his neuro tomorrow and see what he has to say! i know he kidded with us when i talked to him and he said not to stop at any red lights on our way HOME!!! alex has his important ORTHOPEDICS drs appt on wed for his hips! i just PRAY all will be ok!!! and then on FRIDAY we have our VNS appt....and did i mention james is leaving for a couple of days...??

soooo, we are HOME and we are HAPPY and matthew is doing well! thank you to all that thought of him and said a prayer! he is our STRONG LITTLE BOY and we are sooooooo proud of him! when we got out of the hospital, we took a TROLLEY ride that went around, we are DEFINETLY going back there AGAIN! it is such a BEAUTIFUL OLD historic town!!! and then when we come back, we are going to the KEMAH BOARDWALK! it looked like fun! there was also the RAILROAD MEUSEM there in galveston but we were unable to make it out there! james and alex got to do some FISHING while we were there! i am soooooooo happy they got to do that! soooo...wer are HOME, THANK YOU GOD and we are as always on alert with mr matthew. we are also going to be talking to the MDCP worker on wed and i am talking to his PEDI about night nursing......GOD WILLING all will fall in place!!!

thanks again! everyone's words of encouragement and support ALWAYS help me and my family to be stronger! those little words LIFT ME AND MINE UP! thanks you!

take care everyone and GOD WILLING there will be at least a LONG WHILE before we have anymore of this drama!!! thanks again!

GOD BLESS...james, maria, alex and matthew