More Good Than Bad

Four hours of driving for a one hour appointment...Oi! But, it was at least a productive hour. 

We'll start with the good news.

Happily, and cautiously, we are going to start weening Olivia off of her diuretics. Olivia will only take bumax once a day now. Because of that, Olivia will no longer have to take aldactone too. The aldactone adds potassium that the bumax makes her pee off. So as you see, it is no longer needed. I am super excited about not having to change the sheets EVERY DAY! Serious. Every night. This is even with us changing Livie's diaper two-three times during the night. But, no fluid on the xray this morning makes it totally worth it.

In other good news, I love Dr. Pinto. I am facebook friends with one of Livie's nurses. She liked the picture from Livie's passion project session and Dr. Pinto saw it and made sure to mention it today. It made me happy. Also, Dr. Pinto gave me her email today because calling the triage nurse is the worst. Also, Dr. Pinto told us to let us know whenever Livie is ready for her Make-a-Wish and she'll get on it. Also, we sat and chatted about our girls. She has a daughter Ella's age, named Ellie (not sure on the spelling but still, how fun) I just love that Dr. Pinto never seems to be rushing in and out of the room and always takes the time to answer all of my questions and then some. 

So, for the "bad" news. It's not really bad but it's not ideal. Livie's oxygen really should be coming up by now. It's not horrible (even the room air trial we did was so-so) but it's certainly borderline. Dr. Pinto is going to give Livie another 4-6 weeks to see if she regulates and then have us come back. If they have not improved then we will be doing a cath. She wants me to give her some breaks from her oxygen between now and the next appointment and record her sats. We'll see how things go...I hate caths. They're stressful, scary, and make for a long day. But we'll do what we gotta do. And hey, it's not open heart so that's good.

So there we have it. Livie's taking her time recovering from all this but we're definitely getting there. Hopefully by Christmas we can officially say Livie has recovered well. I'm getting tired of saying "is recovering."