today was a first. and i don't know why the blog is posting in this font. whatever. i'm gonna roll with it. bc i've been doing that today. (ok, so it isn't posting in the weird font it was typing in...i just noticed that. sorry.)
i don't really know who reads this blog. but can i just say, i love love love having fellow mommas of kids with MLT that i can talk to? thanks to my pal kelly for getting some of us together on FB. what a lifesaver that has been. and i know these women/families and i will forever have a bond, even if one day, this atrocity is...
like today. today as we drove home from the hospital ON THE SAME DAY WE WERE ADMITTED (more on that soon!)...i kept thinking...let this be behind us. let it.
i want to scream in joy-- IT IS IT IS IT IS!!! but i know it might not be. but for today. it is.
so all weekend, ridge had dark stools. but we can check his hemoglobin at home. and it was above 10. And at 10 or below, we transfuse. So....we kept him at home, even though we knew he was bleeding. because at the hospital, all we'd do is sit there and wait for him to hit 10. so why wait there? why not wait home? so we were brave little parents and did that. but not without lots of texting/calling/facebook chatting my chiefs of staff, andrea and kelly.
sooo....the one thing we did do this weekend is up ridge's amicar. bc...that's what kelly and andrea do. :) so we tried it. we didn't ever know to try that before. no, i didn't ask my doctor's permission. i just did it. and it slowed his bleeding. i didn't up it a lot, so it didn't stop the bleeding. but today, when we went in to the hospital for blood....i came clean with my dirty little secret, and the hematologist thought it was fine, and actually prescribed ridge to be on a higher dose, and told us how far to up it when he bleeds. so lookie there. it was a good experience. when we arrived at the hospital, and found out we'd be staying only...today...i was in shock. but excited. so while we are pioneering with that, may as well keep on pioneering. so we did. we decided why access his port? yes, he has it to get blood. but we aren't even staying the night. so we will stop his octreotide. for the entire blood transfusion. which we've never ever ever done. so for 3 hours, he didn't receive his continuous med. and while we were in the itty bitty hospital room, he had two diapers. the first, while dark dark, was not as dark as yesterday's diaper. the second diaper, when i was deciding maybe we should stay the night, was even lighter....the Lord knew I needed some push in one way or the other... so we decided we'd come home. and at our resident's suggestion, we decided not to stay around for a post transfusion lab. what's the point? he'll be above 10, so if we spend the night we may as well spend it at home. so that's what we're doing. taking great strides to get rid of some of the burden of this disease. and today was great. and we got in our car to drive home...and i couldn't help but think as we drove down the highway....as the hospital got farther and farther away...that maybe, just maybe, we left some other things back there too. for good.
at least that's what i'm stickin to tonight.
we try to live day by day. and this day, this day was a reallllly good day.
- wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.