>> Monday, April 17, 2017
Kennedy Krieger called back about his MRI.
Sigh. Am I making too much of a big deal over this?
We wait. Again. For how long? I have NO idea.
Because Bug needs to be sedated, the anesthesiology team needs to be brought in and that can 'take some time'. No clue how much time, but clearly there is no priority here.
I told her thank you and pointed out that he is walking less and less and it's very concerning. She said: I'm sorry to hear that, we will get that scheduled.
Meanwhile, he is back to seizing every few minutes while sleeping. Not as bad as November since we can wake him up and he plays during the day, but one can very clearly see he is in pain. His rescue meds are stopping the seizures for 4 hours at a time now as well. Have to be careful with that though, he does build up a tolerance so quickly. The question is WHY is he back to seizing so much and what can we do about it? We wait, is what we do. Wait to see if it his stomach, which we KNOW he has issues with, is causing him all sorts of problems (scheduled March 30th for May 1st).
|Bug's ABR at PCH - 2010|
I really am dumbfounded why this boy has THIS luck. I have to assume it's because he can't speak and because his EEG is so ugly. But he still IS. HE IS and he deserves all the help we can muster.
We are always waiting for someone else. His life...is not his. It belongs to the Scheduling department and to them, he is just another sick kid. We can't schedule all three tests at one time though, even though he seizes when he is out, we can't do that because THAT isn't considered a medical risk like respiratory distress. It's JUST epilepsy after all. I imagine I should have pushed the hell out of these more when he was IN hospital. They could have done ALL of them in November when he was getting the LP. Not that I didn't ask, multiple times, it was just suggested we do it all outpatient. What a shit idea that was that we agreed to.
|2 year old Bug with Taylor|
We see a young man who smiles and makes everyone around him happy. We see Bug, who can seize all night and still get up and give kisses in the morning. We see Glenn, his father's son who deserves to be just like him.
Maybe our eyesight is skewed because we know him, but I like to think that everyone deserves a chance to live life to the fullest.