Thursday, January 26, 2012

Cardiologist Updates -- Sept-November 2011

As you can probably tell by the photo, Ava has grown to LOVE visiting her cardiologist. She frequently asks to go see him, and is always SO excited when it's time. Such a wonderful, but very vast change from when she was terrified and inconsolable any time we had to go to any doctor's office. I LOVE it! So, starting in September, we were noticing Ava's hands turning blue or purple and along with that she was complaining of pain. We set up an appointment with her cardiologist of course, who couldn't find anything wrong and honestly didn't have an explanation for the pain. He ordered a few labs for some non heart related issues it could be, and ordered up an EKG and ECHO. We were also sent an event monitor to hook Ava up to at home the next time it happened, it wasn't the one you were 24 hours because it wasn't happening daily. Anyhow, of course(and luckily!) by the time we were sent the monitor in the mail, the events had already stopped. Ava was already scheduled for her six month echo and ekg so those were still done.

We went back in October for the ECHO. Ava did great! She layed down with me and watched Dora Saves the Mermaids, as she always does, while our favorite echo tech did her thing. The echos are about a 20-30 minute process. We unfortunately do not get results of the echo same day, we have to wait for a followup appointment.

So back to the Cardiologist's it was in November to hear the results of the echo. Results were, everything looks good, the conduit is still leaky(duh) but the stenting did help out. It is the general consensus amongst Ava's team of doctors and surgeons that she will need her next open heart within a year. I have known about this looming third OHS for what feels like EVER now. But hearing a YEAR, kind of knocked the wind right out of me. With all that being said, Greg and I are hoping to inquire about doing the surgery this summer, while she is out of school so that there will PLENTY of time for her to heal and for her little chest to completely heal before being back at school and away from my watchful(overprotective) eye. I don't wish to rush this surgery, but at the same time I do not want Ava to have to miss months of school or put off the surgery so long that it becomes a dire need and I have to watch her health deteriorate. We go back for Ava's six month Cardiology check up in a few months, we will be asking lots of questions, getting new echos and a new picture of how things look, then.



Typical Ava Face :)

So not ready to have to explain to Ava why she has to go through this all again, for her to be in pain and have little I can do to ease it, to call a hospital our home again, so not ready to hand my baby over to trusted hands of her surgeon and nurses, but I am absolutely ready to not have this surgery looming over our heads like it has the past two+ years and to not have to deal with another OHS for YEARS to come after that, god willing. :)

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