The sleep study was quite an ordeal! Whoa. Poor Carter had wires hooked and taped all over. His head was wired up and bandaged so he looked like he had had brain surgery. I wondered how they could possibly get anyone to fall asleep under those conditions. It was also crazy cold in the room because they didn't want him to sweat and have all the probes and junk fall off.
I was asked to record the time every time he burped, coughed, or had one of his episodes we were attributing to reflux. I didn't get a lot of sleep either.
Come to find out he is not having reflux at all. Well, that's what the pulmonologist said who watched the taped and deciphered all the recordings. I still have to hear back from the GI Dr. to see what she read on the ph probe test. I am guessing there will again be no sign of reflux.
So, okay. He isn't having reflux. He is having seizures. Every hour all night long.
And a few during the day, but not every day.
Tomorrow we are going in for an MRI and then we have an appointment with a Neurologist and epilepsy specialist guy. We have an appointment for a "sleep deprived EEG" in April which I am hoping for another miracle to get that pushed up.
They already started him on seizure medication but he is still having them. In fact Erin just came down and told me Carter was having 'reflux'. I just put them to bed twenty minutes ago.
sigh.
I am so glad we are on a track, though. I hope the MRI is clear as a bell tomorrow. But it will be good to have that picture.
Now, go watch the Kid History video.
You wont be sorry.
8 comments:
ugh. sorry that you have to go through this. do you remember when drew had that all night sleep study at UofM? Ultimately, they just took out his tonsils.
we're praying for you guys. reflux sounds a bit better than seizures. ?!! :(
not fun ... but good to know. Did you get my VM? Has he been on Regulin (sp?) for reflux? Apparently, it causes seizures. Prayers. Hugs. LOTS of love!
This is a crazy journey your on. I hope the cure "reveals" it's self soon. Your a wonderful mother....keep your chin up!
I am sure this is all frustrating for you Corrie.....hang in there. They'll get to the bottom (or shall I say head) of the matter.
I'll say a prayer for Carter. Cause we love your family
That is crazy. Please keep us updated.
I'm so glad you were able to get him in sooner! Everything will work out soon. Hang in there! Great work Mom!!!
Having a chronically ill son for the past 7 years causes me to have great empathy for what you are going through Corrie. I will be anxious to hear what the final results are - it is always a process. Love you guys. You will be in my prayers.
Hey chickie, I will be praying for answers. Poor guy has been through so much in his life.
Post a Comment