Sunday, September 29, 2013

So many doctors... even more appointments

       Recently, we switched cardiologists not only for the convenience of being centered at one facility at home, but also because driving back and forth to Baton Rouge wasn't feasible all the time. We knew with Olivia's previous healing patterns that fluid in her lungs was most likely going to linger for some time after this surgery too. Well 6 weeks post surgery and she still has fluid. No big surprise to us, but validates that switching to someone local was a good decision for the mileage and gas costs.  We are still trying to figure Olivia out in some aspects. As many of you know, before surgery she huffed and puffed whenever she did anything. Immediately post surgery, that huffing and puffing went away. Well, it seems that at times it is creeping back. So, we mentioned it to her new cardio and his answer was to see a lung specialist... aka pulmonology. He also recommended Olivia see a dietician because she is not back to pre-surgery weight and her appetite at times stinks. So we made two appointments.

     We saw the pulmonologist this past week, who basically thinks it could be from many different things. It could be her tonsils, adenoids, and a smaller than average airway. It could be because she has a naturally floppier airway than most and the only way to get better is for her to grow. Lastly, it could be because she just has some weird malformations in her lungs that puts her at risk for fluid and lower sats. He told us to see an ENT and have a sleep study. This will narrow down some of the possibilities and hopefully give us more concrete things to treat. So one appointment to consolidate things  has led to 4 more.

     We have also been a tad discouraged with Olivia's sats because many of our heart friends who are also post-fontan are enjoying sats in the 90's. We have always wished and prayed Olivia would one day live and enjoy sats like that. Unfortunately, she is still 85 to 88 max. The point of the fontan is to maximize her oxygen saturations and make her as pink as she can be. Hopefully with time and more appointments, we can one day reach the 90's as well.

   We have a lot of fun and exciting things coming up soon including a trip to Disney World. We will make sure to post some pictures and share our special memories with everyone as well as updates from her many appointments.

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