Well, Will didn't end up getting the ventilator removed today after all. He was anemic and not oxygenating well, so they gave him another transfusion (from the same donor) instead and they're going to wait and see if he's strong enough to try tomorrow but that also depends on a couple other factors. His heart murmur is back, and the doctors are considering whether to try another dose of the medication he was given before. We're not certain if the heart medication (which is a vasoconstrictor, causes veins to shrink down) caused the poor circulation in his legs and the black toes, so giving him enough to effect his heart may cost him his toes, feet or legs if he has a worse bad reaction to it. His other option is surgery, which sounds to us like it might be the safer option - a surgery that they consider pretty quick and easy (doc said it's about 20 minutes and doesn't bleed much), has a very high success rate and is pretty much guaranteed to permenently fix the problem, or medication which may or may not fix the problem and may or may not damage or cause the loss of his extremities. I don't like the idea of either one, but if something has to be done surgery is starting to sound safer than an unknown reaction to the medication.
His weight was back down to 2 lbs 12 oz, but still over his birth weight so that's good. Really nothing else to report, which at this point is good news. We didn't end up staying at the Ronald McDonald house tonight, since he was doing well we're comfortable coming home. I want to save my time for when he gets the ventilator removed or anything else major, they try to balance it so nobody gets an unfair portion of time in there.. I feel better about that too, someone who really needs it that lives further away than I do can have it. When he gets the ventilator removed though I'm not going anywhere, last time they tried that he coded (went into cardiac arrest) a few hours later. We're pretty sure it's unrelated, but that doesn't matter at all to me I'm going to be with him as long as I can after that just to make sure he's okay.
The swelling on my feet is almost gone today and I'm completely off the pain killers. Still in some discomfort but very little pain. We got a parking pass and meal vouchers, it took them 2 weeks to figure out we're going to be there all the time! Our social worker, who should have made sure we got those, went on vacation while I was in the hospital too so we fell through the cracks and didn't get the same quality service they claim to usually offer. Oh well, at least we got them! We didn't even know they were available, that saves us $3/day for parking and $4 each per meal at the cafeteria which helps.
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