Noah got rid of a lot of fluid in the last 2 days. Not enough, but a lot. Were adjusting diuretics down, and lessening the amount of fluid we pull off the ECMO circuit. Were going to try to keep Noah even, to just slightly negative. He still has fluid in the tissue around the lungs, and some chest wall edema. Were going to give him some time to shift the extra fluid hes holding on to, and not dry him out too badly that we put strain on his kidneys. We NEED his kidneys right now.. And theyre kind of stupid organs. A little bit of stress and they crap out.. And Noah absolutely cant have that right now. Were also slightly weaning his ECMO flow.. From 130-120-110-100.. And giving him until tonight, or tomorrow morning on that. Its so hard to watch. But Im hanging desperately to hope. Noahs surgeon hasnt told me that there is nothing left they can do.. But that conversation isnt too far away. A cath this coming week could be possible, if he cant come off ECMO, or if hes struggling to oxygenate once off. I dont know where we go from here though. No one knows. We take just one day at a time.. And sometimes just an hour at a time. Just pray for my baby. For all of him. Even if he comes off ECMO, it may not be all up hill from there. His bowels havent worked in nearly 3 months. (Though he has pooped TWICE this week. Without help, that is HUGE!) his heart is still sick. His lungs are sick. His kidneys arent perfect, and his liver numbers are rising. Coming off ECMO and making it home are two very different battles. Im trying so hard to stay positive. Im never, ever giving up on my baby. But while losing ECMO is a HUGE step in the right direction.. Noah will have to put up a HUGE fight the rest of the way out.. All by himself. But gosh, I know what a fighter my baby is.. And if anyone can do this, its Noah. ❤️💙
Posted on: Sat, 09 Aug 2014 17:01:25 +0000
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