So, my husband spoke with the doctor Friday about Elias' EEG results from Thursday and there was minimal change in the seizure activity and the hypsarrhythmia brain waves at this point. So we have decreased the amount of vigabatrin we are giving him (since that is the one that can eventually lead to visual impairment) and if it is not doing what it is supposed to there is no reason to keep him on it for a prolonged period of time anyway.
He started two new medications yesterday, bringing the grand total to 5 medications...for an 8 month old. I am getting a little discouraged at this point because it doesn't seem like what they are telling us "will work" hasn't worked to this point.
After starting him on the two new medications, he has gotten very fussy since last night and the whole day today. We consulted with his neuro docs and we are not really comfortable with what they are suggesting... that is while I feel "snowed in." This feeling of being trapped in this continuous cycle of medication combinations, which one will work... which one will fail... let's try this, that's not working... it's all very frustrating.
I want the best for my son, and I am no where close to being a doctor, but something about all of this doesn't feel right to me or my husband... is it that we are having a hard time trusting the doctors opinions, or is there a better opinion out there that we just haven't found yet... I mean ultimately, it is our decision what to do because he is our son, right?
And on top of everything else... in one more week my husband will be put on night shift, which will further complicate things... but I am trying to see the silver lining... at least he didn't get laid off, right?
I know that it could be worse, and that people go through worse things every day... I think we are just feeling somewhat defeated at this point... I know there is a purpose and a season for everything (hence blog title/subtitle), and that this situation is no exception.
I just want to get to a better place with all of this, not for me, but for my son. He is such a sweet little guy and I just want him to be happy and healthy and over all of this.
So, I guess we need a shovel, so we can start digging out of this snowy rut...
A few hours after posting this a friend's facebook status hit me like a ton of bricks... it said "It's a slow process, but eventually the sun melts away the snow." It was perfect, and that's what I am holding on and believing.
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