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

Friday, August 18, 2006


yep, my boy will be doing the 24 hour halter monitor testing on MONDAY!! how i will keep him from pulling on them, i just don't know, ALTHOUGH, he is use to them from the numerous hospital stays, i think he will do just fine!! anyway, this came about because i called his cardiologist today to ask them about what happened late last month....i know, why NOW am i asking questions about what happened almost 30 days ago, right? well, i have been TRYING to find a sequence of events that may lead me to find out HOW and WHEN he will have another seizure! ok, i know it is far fetch but i can try, right?!

soooo, it started the last week of july (25th) and since he is now on the PULSE OX all night long due to his change in meds, i am able to monitor not only his oxygen sats but also his heart rate. well, during this night, his heart rate dropped down to the 40's and then dropping down EVEN LOWER into the 30's which then would set off the alarm which would then make his heart rate go up for a bit and then back down....well, this happend for about a WEEK or so and it lasted for MORE THAN 2 HOURS....i would just sit there just WATCHING and worrying about his heart rate (i actually woke him up a couple of times to try to get it back to would for a couple of sec then go right back down..) i was worried his heart would STOP!!! until it would FINALLY start to increase and then go back to semi normal (50's & 60's)... he did this for about a week and then BAM he had his big SEIZURE on wed the 2nd...during his nap so i don't know how low his heart rate was THEN!!!!!!! :( but the night before, his heart rate was down it a CLUE? i have been watching his heart rate every NIGHT and so far his heart rate has been his 'NORMAL' (60's &70's) but i am WATCHING!!!!!!!!

anyway, so i called his cardiologist and told them 'look, i know that i had called you about this a long time ago (a couple of months ago (he had been sick and i had him on the pulse ox) during his nap he was on the pulse ox...his alarm sounded (if HR drops below 40) which had NEVER happened before) and ya'll told me he was just asleep not to worry about it, BUT that time it only lasted a couple of minutes...well, it has happen again' i went on to explain what happend in july and then i told them, 'it's ok if you tell me that all is ok and it is NORMAL!!!', she said she would tell the dr and would call me back.....she did. she told me she had talked to the dr and he wants matthew to be on the 24 hour holster monitor (basically, cardiac monitor) to see what it records. i dont' know what is going to happen but i told james that it might not tell them anything since he is not doing it right now, you know?! I JUST PRAY THAT ALL WILL BE JUST FINE!!!!