Ry had a clinic appt on the 4th. She did great as always. Her labs were just where they needed to be with very little change, her echo looked good and Dr. Fixler was happy with her growth. A couple of things worth noting:
- Her labwork showed that her BNP number indicated that her organs and body in general is in a happy place. At the time that Ry was sickest her BNP had risen to over 30,000. This indicated that her organs were on the brink of shutting down (or should have already shut down and sent her body into shock). This is when we were immediately forced to act and move toward the placement of the VAD. But at her appointment her BNP was 176!! Isn't that amazing?? Wow!
- More big news! After 2 years of a middle of the night med doses, we're all done!! I'm ecstatic that I no longer have to set an alarm to get up and give Ry Sildenafil. Actually, her echo showed that the pressures in her RV were so good that we were able to stop the Sildenafil all together! This makes me the happiest to think that Ry is doing so well that after two years of this medication, her body is healed enough to be without it. Discontinuing this medication also means we went from 5 dose times per day to THREE! Yes, just three times a day! It's amazing the progress she's made over the past 15 months. So to all you parents reading this blog who are new recipients of an organ. They aren't lying when the team says it will get better. It's hard to believe you'll ever shed enough of your childs meds to be considered bearable, but it's true :)
We're just so super thankful that her health is continuing to hold up. We've stayed in as much as we can and are trying to take real precautions to stay well. The hospital is so overwhelmed with flu cases that they are taking over different departments just to handle the overflow. PLEASE make sure you get your vacinations and stay in if your sick, it's for your own good, the good of your children and the good of those people who just can't afford to get sick.
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