I got a call from our lovely docs at Stanford and they said the HLA lab is still working on Owen's antibody results. We should have an answer by the end of the week. We're praying for some antibodies that are going to surrender when we attack. Meanwhile, I mentioned that I had seen Dr. Stock and we upped Owen's Captopril (heart med) up to 5cc's/3times a day and will go up to 6cc's by next week. I told her we didn't know the protocol for increasing meds, so we improvised until Dr. Stock had a chance to speak with Dr. Rosenthal (at Stanford). She said that ideally we would have doubled his Captopril by now to 10ccs/3 times a day and that the goal was to get him to 20cc's/3 times a day. That's 3 ounces of Captopril a day??!! She said "yep, that's the goal". I'm speechless.
I trust they know their stuff... Owen isn't the first kiddo in heart failure that they've worked with. If he tolerates this amount of increase and his heart function potentially improves, or even stays the same, we can put off transplant THAT much longer. I'm willing to try anything. Anything.
9 comments:
Holy crud- that's a lot of Captopril! I think the highest Braden got to way -shoot- not anywhere near that! Don't you think we 'Heart Mom's' should get an honorary degree in Pharmacology? Or atleast make us LPN's or something!
Caryn~you ALL should receive purple hearts, in my honest opinion!! :)
Soooo wonderful to hear Owen's moving right along in preparation for his future. I get so excited when seeing there's an update~I've totally fallen in love with your precious little guy! :) When you get back down to Stanford, I'd love to drive down to meet you all! :)
Always praying and sending big (((HUGS))) G'Ma~rella :)
Do they give you a gallon of captopril at a time? Anyone is invited to camp taylor. It was the coolest experience and definitely worth looking into. If we had only known that you would be in California we could have gone together. There are a lot of families from Stanford and a NP from Stanford was the head nurse.
Oh my goodness, when you mentioned 20ccs of captopril previously, I thought you meant 200ccs per day, not 3x a day!!! That is insanity...you should get an honorary MD behind your name!
That is a crazy amount of any med for a baby, let alone captopril! You are amazing. . . I your blog just keeps getting cuter. How do you find the time. . . Always praying.
XOXOXO-
Heidi
Praying for sweet Owen, and you!!!
So glad last week is behind us. It is so hard to see them that way. I will for sure post pictures soon!!!
Hi Andrea,
Just in case a busy Doc forgot to mention.... Be sure Little Owen gets lots O' water with his Captopril.
There can be drug interactions with aspirin and lasix diuretic. Watch for dizziness and lightheadedness.
We can never be too careful with these little Heart Angels, especially in the summer heat!
Love,
Worrywart ;)
I don't know much about medication - but that does seem like a lot. I agree that they should know their stuff and if you felt good about your decision to trust them - then go for it!!!
Wow..that's alot of medicine in one day. Whatever it takes though :) Hope you guys enjoy your summer!
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