Friday, August 28, 2009

Reflux AGAIN

Well I thought the reflux was under control.  I was sorely mistaken.  Today has been exceptionally bad and it's about to make me CRAZIER than normal!  We see our ped today and I'm hoping he can give me something that Noah can tolerate.  He can't take prilosec because it's in a suspension and he gags and throws up the SECOND he tastes it.  He doesn't do prevacid.  He hates the taste (I've tried everything to mask it) and it's grainy.  He usually has a coughing fit (as ususal I fear aspiration) and it ends usually in throwing up whatever is in his stomach.  Today we have lost vigabatrin, topamax, prednisone, and zonegran all to spitting up.  I just don't have the strength to fight it anymore.  I usually jump right up, grab more medicine, more formula, and start all over.  Today I didn't.  I'm tired.  I'm really tired.  It's such a struggle to give meds sometimes and a more difficult struggle to keep them in most days.  I'm ready for things to get better.  I cling so tightly to our schedule (7 med doses a day, 7 feeds a day (only lasting 30 minutes max but he has to have at least 720 mL per day or we risk dehydration)). I try to get everything done when it's supposed to be or we are up until midnight and, again, I'm tired.  I would love to feed him when he was hungry.  I would love for him to actually be hungry and let me know.  I would love to feel comfortable that he would eat enough and I didn't have to measure everything and document every little detail of our day.  Wouldn't that be nice...

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