MATTHEW ISAIAH......on vacation in PICU!

HOLA everyone! no, this is not a mistake, no i did not hit send on an old email, IT HAPPENED AGAIN!!!!!!!!!! we are currently on vacation here in GALVESTON, TX....we got here yesterday and have been having a GREAT TIME.......we got up early and left the hotel near houston on IH 45 towards Galveston...we were all ready to go to the beach and have some GREAT family time exploring the beach front and getting some AWESOME pics on the beach....well, as we were driving down there, it takes about 45 minutes to get there from our hotel.... matthew fell asleep, taking a nap when....james was keeping an eye on him when he started to seize AGAIN!!! so i jumped to the back and put him on his oxygen and then james pulled over to ask nearest doctore/fire station etc....we went to where they directed us and we couldn't find it so i told james just pull over....he had stopped seizing but then he started up again....i gave him his DIASTAT and i told james, "JUST CALL 911 and let them come to us!!" and they did! so, they transported him STILL SEIZING to UTMB in galveston. we got there and at first everyone was really calm and then i don't know WHAT matthew did but then all of a sudden you see everyone jumping on him, trying to get a line on him (they were at all 3 points of his body doing it at the same time) they were trying to intubate him but he was still clenching his teeth (still seizing) and people were coming and going !! it got a little scary there for a bit! and THANK YOU GOD this hospital did a BLOOD GAS and they took xrays and they gave him meds etc without me having to PROMPT THEM (memories of missouri!) but it was a great ER hospital and they did everything they were suppose to! soooo, they kept trying to intubate him but they could not get it. i told them that the BIPAP worked really great with him too! they said they didn't have one and they would have to have the RT MANAGER approve one and bring it down?!?! interesting...anyway, the PICU drs would not want to accept him unless he was intubated....he looked fine to me so the ER dr asked ME, mom, do you think we need to intubate him or do you think he is ok?! you know him best....i told him that he looked fine but if he NEEDED to be intubated, then that is what he needed but i didn't think he needed it.....so, they did another blood gas on him (the first one was AWEFUL!!!! he was very acidotic?!) and so he decided to take a blood gas and it came back NORMAL!!! :) SO, he convinced the PICU drs that it was ok to take him up with OUT BEING on a vent!!! soooo, we took him upstair and this PICU was WAY DIFFERENT than any others! there are NO ROOMS just curtained off areas so i could not be by his side!!!! :( they don't let you stay there at all. so, for the FIRST TIME EVER, he is BY HIMSELF in a hospital without anyone there!!!!!!!!! it is DEVESTATING me not being there.....but we are trying to do what is best for ALEX too. he is on vacation and he needs it to be a NORMAL type of experience!!! so, we decided to take him to the beach and then HE had drama there when an unleased HUGE PUPPY (i think it iwas a boxer!) came charging at him and knocked him over!!!!! no harm done except alex got sand on him and that was the end of the beach time!! it didn't help that he was tired to begin with but it was like the straw that broke the camels back! he was grumpy and didn't want to walk etc....poor kid! so, he took a nap and dad went fishing for a bit while stayed in the truck with alex....then we took him to the MCD's to play a bit and now we are back at the hotel missing our boy....we are soooooooooo sad without him! we keep looking at his seat and we keep saying our usual, "ok, boys..." alex keeps saying he misses brother....we just PRAY that he get's to come home TOMORROW!!!! PLEASE PLEASE PLEASE, pray that he is ok and get's to come home!!!! when we called over there, he was wide awake and playing!!! :) he was just babbling and looking around...man, i miss him sooooooo...

well, we are leaving here by 7am and heading over to the hospital...we can start seeing him by 8am so we want to be there then. last night, his HEART RATE was all over the place (40's up to 110's) so last night i even told james, "hmmmm...i wonder how we call 911 from the hotel?!" i think we have figured it out that when his HR goes down into the 40's & 50's that means that he is getting ready to have a SIEZURE....dr T. said that that could be his AUTONOMIC RESPONSE and that is now our clue when he will have a seizure.....glad to know it! i tell you, i have been playing detective trying to find a way to know WHEN he is going to have the seizure and since we started to monitor his HR and pulse ox, his HR went into the 30's & 40's right before his 8/2 big siezure and then when he had a smaller one, 8/25, earlier that day during nap, his HR went into the 40's & 50's and then he had a seizure and then this time it did it again!!! last night it did it and then today during nap he had his sieuzre!!!!! isn't that wild?!?! the things that i keep track off, huh?! THANK GOD i did!!!!!!!!!!! at least we have a BETTER idea when it MIGHT happen, right?

someone told me that we SHOULDN'T be taking him out and about.............man, that made me upset!!! we can't keep these kiddos locked up and not going anywhere just be cause he MIGHT have a seizure!!!!!!! can you imagine that? would you like your kid not to be able to ENJOY life and EXPERIENCE life?! i want my baby to do that and soooooooooo much more!!! nothing we are doing CAUSES him to have a seizure...that is unfortunatly part of his life now!! i refuse to keep him PRISONER in our home for FEAR that he is going to have a seizure or something if we leave there! i don't want to do that to him!!!!!!! he was having soooooooooooo much funr on the trip!! he LOVES going places and gets sooooo excited getting out of that house! he loves being with us as a family! i refuse to leave him out just for FEAR!!!!!

ANYWAY, any thoughts and prayer for his quick recovery would be appreciated. we are going to be going to talk to a man on FRIDAY about the VNS (vagal nerve stimulator) procedure.......that MIGHT help him out since meds don't seem to be working...PLEASE PRAY that that is the ANSWER and that he does well with it and it helps him to be off of drugs and not having any more seizures!!!

thank you soooo much for all thought and prayers....poor little one is alone right now but i know he is doing well.......i know he misses us and we sure do miss HIM!!!!

anyway, please please pray he is doing well and will come home tomorrow!! somehow, they have different rules here and MIGHT keep him longer.....i sure HOPE NOT!!! :) he seems to be back to his old self!!! :) my little stinker!!
ok, gotta run and get some sleep! take care and GOD BLESS...

LOVE,
JAMES, MARIA, ALEX AND MATTHEW
www.babiesonline.com/babies/m/miraclematthew
www.babiesonline.com/babies/b/babyalexii
http://blessingsinmylife.blogspot.com/