Man what a crazy emotional couple if days, so we got discharged from the hospital saturday, Aiden had not had any seizures since thursday night so we were excited! We once again had some meds we had to have to go home, well this is were it starts the stress, its saturday and the meds he needs have to be specially made into a liquid, so you have to have a specific pharmacy fill it, well of corse its saturday afternoon and this is going to pose a problem getting it filled, as most places if they can even fill it cant do it till monday... Well they wont let us go unless we can get it filled. I call 5different places with no luck... By sombe grace of god the nurse had faxed it to a pharmacy in vancouver who just so hapltened to of filled it friday and it was waiting for us!!! So we get to gob home! Well the excitment is short lived because that night and into sunday early morning Aiden starts having seizures again... Im terrified to call the neurologist because im sure theyre gonna admit him again, so finally I call and she has us go to the er where we can get another med that needs to be specially made and with it now being sunday no one is even open, so last night we go to the er they give him the med and add the b6 vitamin into the list now of 4meds he is taking, so no sooner do we get home and settled he starts having them again, so all last night and this morning he is having seizures, and now on top of it hes so drugged that I cannot breast fed him I have to basically force him to eat with a bottle, after I have worked so hard at the breastfedding and really wanted it to work, now im wondering if I should just pick my battles and give up because I really dont need one more stress...
So I again called the neurologist this morning, and at this point she said there is really nothing she would do in the hospital and that he may just continue having them and we just hope the meds calm them down, if he cintinues being knocked out and not wanting to eat them hell have to be admitted, and she said she has a syndrom in mind but wants to talk to the genetisist before talking to us about it... But it dosent sound good or promissing... So I constantky have running in my mind all the worst cade sinarios and in the meantime watching my son have siezures.... I am extreamly worried for what the future holds for aiden and our family
So I again called the neurologist this morning, and at this point she said there is really nothing she would do in the hospital and that he may just continue having them and we just hope the meds calm them down, if he cintinues being knocked out and not wanting to eat them hell have to be admitted, and she said she has a syndrom in mind but wants to talk to the genetisist before talking to us about it... But it dosent sound good or promissing... So I constantky have running in my mind all the worst cade sinarios and in the meantime watching my son have siezures.... I am extreamly worried for what the future holds for aiden and our family
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