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.

Tuesday, September 17, 2013


     Grateful is one word. It's meaning is simple and as a word can be overused at all the wrong times. Today, as Olivia screams adios amigos down the driveway, it is the only word that comes to mind. Throughout Olivia's life, there have been times when I have been anything but grateful. I would wish people would stop asking how she was, wish that she was "normal" just like everyone else, and just plain be angry that she had no say in the matter but would have to suffer to live. Grateful was a joke to me.
   Olivia has shown me that grateful is the only way to push past the hard parts and enjoy the good ones. We are the very fortunate. Olivia, while running into some minor speed bumps with surgeries and recovery, did only that. We are not waiting on a heart transplant, we are not in the hospital, and for that we are grateful. Life's pace is always so hectic. There are very few times that as a mom and nurse, I get to stop and enjoy the moments. I have realized that those moments are more important than anything else we can do. Whether it is sitting in our weekly cardiologist appointments or running to football for Nathan, I will be more grateful for those moments.
   Grateful may be only one word but its meaning is endless.

Update on olivia's health:
We saw the cardiologist yesterday. After increasing her diuretics, her chest x ray is finally clearing up. Her potassium is still on the low side, but not horrid. We will see the cardio next monday again and then maybe start spacing out our visits. Olivia hasnt fully gained her weight back but she isnt losing weight. We may see a dietician if her eating doesnt pick up soon.

Monday, September 9, 2013

Hectic and worried but good

Olivia and I made it home safe and sound August 28th. We have had a busy week or two getting back to business as usual. We are seeing the cardiologist because her pleural effusion is not completely gone and instead of weaning diuretics, we are adding more to it.
   Olivia is still not back to her usual appetite of vaccum cleaner and has lost a good bit of weight. She is playing longer with less huffing and puffing but we have yet to see the "FONTAN" energy yet. We will continue to see her new cardiologist... Which is a story for later... And hopefully transition to her new function as a fontan kid.

  We can't thank everyone enough for all of the prayers, thoughts, encouraging words, and still need them to keep coming. We aren't out of the woods yet, but are trying to find the path.