Ramona Mae

I’m sure Jane will be posting some thoughts, but I wanted to let everyone know that Ramona came home yesterday, less than 24 hours after the surgery ended. She’s incredible. The news from the surgeon was positive, and we’re all enjoying our long weekend.

Thanks for your support.

Andy

I spoke with the cardiologist this morning very early. I think we’ve gotten some good news. She was able to meet with the CV surgeon and cath surgeon last night to discuss Ramona’s care and it sounds like we have a good plan.
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We’ve had a busy couple of days.

Wednesday morning Jane took Ramona to the cardiologist. She called them on Saturday after Ramona had a what we think was a tet spell. She was playing outside with some other children and turned a bluer color and had a hard time breathing for a short interval. Ramona’s cardiologist scheduled the Wednesday morning appointment.
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Hi there, it’s been a while! We’ve been white-knuckling through these final days of winter and can’t wait for the SPRING. A quick update:
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We saw the cardiologist this morning and got some more information. Here is what the cath surgeon is proposing:
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We received an ambiguous phone call from our cardiologist’s nurse today. She wanted to let us know that Dr. Wax (the cath surgeon) had heard back from his overseas colleague and that Dr. Wax is now recommending we try something surgical for Ramona.
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With all of the shopping, wrapping, partying and whatnot this time of year, it hardly seems like a good time for reflection and introspection. But what the heck, here goes anyway…

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Ramona is two years old today. She’s shaping up to be a beautiful, sweet, challenging and charming little thing. She loves turtles, sitting on people’s heads, dressing up (Oh wait! That one is all me…) and playing with Simon. She’s not at all who I thought she’d be when I learned I was pregnant with her, but I just couldn’t be more delighted with the person she’s turning out to be.
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So, I talked to the cath surgeon and cardiologist today. They both felt that the initial evaluation from Halloween’s cath was correct. Dr. Wax, the cath surgeon, spoke with a colleague at Cleveland who reviewed Ramona’s angiograms and also concurred. He is still waiting to hear from another colleague who is out of the country.

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The news from the cath surgeon on Friday put us into shock all over again. For me it feels very much the same as the days following Ramona’s first diagnosis – questions about her future, our ability to face it, fear of losing our daughter, the profound tragedy of it all.

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