Lightening the Load

We just had a visit from Dr Patel, one of Shimmy's Cardiologists, and we worked out a slight change in his regiment. Simon's been throwing up more and we've been thinking that it's likely because of the iron that we've been giving him two times a day. It's an oral medicine and the nurses keep telling us that it's hard on the stomach and even few adults tolerate it well. Simon's puking seems to be clustered around the morning and evening feeds with some spit up happening in between but the significant up-chucks are right around the iron-in-the-stomach times. Dr Patel explained that along with the EPO shots that he's getting there's always the iron supplement that goes along with it but that maybe we could stop both of those.
WooooHoooo!! Those are the most difficult stresses on Shimmy right now. A shot twice a week and iron in his stomach off the table :-) I like it.
We're also moving from Simon getting his Lasix (a diuretic) through his IV to giving it orally three times a day. The less that's going through his IV the better. Dr Patel said that next week we may even start to let Shimmy get a little hungry and see if we can get him back on the boob for nourishment instead of just comfort. He's really only been nursing maybe once a day and only really in his sleep which I think is about instinct more than anything.
I do want to write something specific about how in the last week or so I've felt an even greater partnership with the folks here at CHO. During the first month I would hear from them "you know him better than anyone so let us know what's going on." I definitely heard them but thought yeah yeah you're saying that but what could I possibly have to add to his healing at this time given how sick he is. I know, I know. That's just me feeling inadequate and helpless about this whole thing and I've always been an important part of is recovery.In the last couple of weeks it's really felt like that much more of a partnership with folks here. Nurses really understand that we've been trained and can do a lot of basic nursing care for him and the doctors really do want to hear our observations about him given that we're here with him 15 hours out of every day. We can say that his vomiting seems to be clustered around a specific time. We can report that he's sleeping more but that his sleeping is restful and not fitful. We can say that he tolerates his feeding better over 45 minutes or an hour instead of 20 or 30 minutes. AND, they take all of that into account as they're prescribing or discontinuing medications for him.
It feels good.
Love to All