It's been a whirlwind of a couple of days with Jaime off on a work conference (starting Tuesday morning before we even woke up), a cardiologist appointment (BNP results in a moment), a blood draw, an Echo cardiogram (nothing worse or different really), a fabulous Mamaw sleep over, a increase in formula volume for the little man overall, visits here and there, a long dog walk, some short dog walks, lots and lots of snuggles, lots and lots of medications given and pukeage cleaned up, some good nights sleep for Shimmy, a little less good for Mommy, an occupational therapy appointment, a home nursing visit (shimmy's put on 1/2 pound in just under 2 weeks- not bad, not great but not bad), and finally a lovely car ride with coos and fwapps of his hanging toys to go and pick up Mama from the airport.
All in all an utterly exhausting three days that we not only survived but I think managed pretty well. A huge shout out to all the single parents out there. That was just three days for me with lots and lots of help. I cannot imagine doing it solo. Just can't.
Jaime is home now and I am overjoyed to have my partner in all this back. She's my partner in so many other things but we are joined with Simon in a way that feels exceptional to all the other ways. This is true since he arrived for sure but even more so since August 1st. Hard to believe but it's true. Love me some Jaime Jenett.
So here's the update on Simon. His BNP was down (from 1690 to 1457) and his weight is up (16.5 pounds). His labs came back just fine (HunkyPants even called to say that they were almost "too normal") but that we should just be careful about his output so we upped his Lasix just a little so that he'd be peeing more. Given that he peed on me twice today ("you're taking off my diaper mom? Sweet. Here's a little treat for you!") it's hard to imagine that he needs to pee more but that's a micro assessment versus the bigger picture that says that too much fluid is hard on the heart.
Also I wanted to take minute to write about the "how are you?" or "how's Simon?" phenomena. Those are two common questions to ask and I know that they are rooted in care and love. They are however very hard to answer. It's almost like the way I am sometimes asked "how're you doing?" when really the person is just using that in the place of a "hello" and doesn't really want or wait for an answer. I hope that sounds familiar and makes sense.
It's hard on me and I know that it's meant to be just the opposite. But it taps a well of feeling and sometimes I don't want that well tapped. Sometimes I just want to shoot the shit before talking about my son in heart failure and if I'm asked how I'm doing or how Simon is doing it means that I have to go right there. I'm not sure what a good response is since "fine" doesn't really cut it anymore (although a wise woman I know says that can also be an acronym for Fucked Interior, Normal Exterior- love that). Not sure what to do about that.
Other than that we are all settling into a regular rhythm, as regular as can be with Dr's visits, nurses coming over, meds, pumps, and blah blah blah.
Really, that's all I wanted to say this whole time. Blah Blah Blah.
Love all out there.
Here are some photos from the last few days.
Simon loves him some buzz cut