Latest Update on Jamie

(If you are unaware of what's been going on with our little guy, please feel free to read the previous post...sorry it is so long!!)

Sounds like it's about time for another update. Jamie set off the monitor a couple of weeks ago due to a low heart rate. His was beating at about 71 beats per minute (when he is usually around 130 or so). I woke up when the alarm went off and checked him and he was having another event. Not such a bad one and not so high on the 'scary scale' but an event nonetheless AND we caught it on the monitor. We had the reports downloaded on the machine and it was the first 'official' proof that SOMETHING is going on in his little body when he's having an ALTEs event. Called the doc and dropped off the reports and the doc said he'd contact the head of the pediatric neurology dept at Mayo, who also does the sleep study stuff there. In the meantime, another doc at our clinic recommended that we get an oxygen monitor added to our regimen so that we could determine whether Jamie is getting adequate oxygen during his episodes.

We got the monitor and also a call from Dr. O saying the specialist was on vacation and that they would get back to us as soon as he got back. A week went by, during which the oxygen monitor went off NUMEROUS times during the night. We are pretty sure it was NOT functioning properly plus Jamie kept kicking the sensor out of alignment so we are getting rather sleep-deprived at this point. We called the nurse who supplied the monitor and asked what was up and she thought faulty sensor so we'll be getting a new one today.

So what happens, YOU GUESSED IT...Jamie set off his heart rate monitor last night. The low was set to go off if he went below 65 beats per minute...AND, because we didn't have the oxygen thing hooked up we have no idea what his O2 saturation is. Dang it. We aren't so broken up about the alarm though because he was immediately responsive. Might have even been just a false alarm. Still, it gave me the oomph I needed to call Dr. O and get kinda pushy about this whole 'referral to Mayo' thing.

So now again, we are waiting to hear back. I'm ok with it though because it sounds like when they call (I'm assured today or tomorrow) it will be to give us our appointment time with a pediatric cardiologist. I made a good point with the nurse on the phone today. Basically told her that I understood that they did all of these test to rule out stuff, but it was a month ago. Isn't it about time to start doing some of these over, ESPECIALLY since his symptoms seem to center around heart rate? They said his EKG was fine before, but what if they caught him at a 'good' time and he wasn't doing whatever it is that he does??