Well after our EEG we were admitted and spent 7 days at BCCH.
She was still having seizures, we did a med change in hospital and began wean of her Pheno and Vigabatrin.
We were also given an NG as she was never great at feeding but her new med made it absolutely impossible to feed her. (suck and swallow incoordination is a side effect) Plus we had a swallow study that showed on this drug – she is a 10% aspiration risk and she is a silent aspirator.
Not troubling enough to stop oral feeds but certianly more reason to introduce tube feeding.
We’ll have a consult for a G-tube in the new year as it sounds like Neuro wants her on this med (if it works) for at least another 6 months and if it doesn’t, the other meds they may want to try might make oral feeding more challenging yet.
So we’re a long ways from the end of the marathon. There’s another EEG for us on January 7th. At least this time we get to stay/visit at Canuck Place on the 6th so it will be a little easier.
Jsquared2008-12-27 16:11:00
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You are one tough mama.
