Ramona Mae

Hi all!

It’s a been a while since we’ve posted anything…which is good! Things have been pretty quiet lately. The walk in August was a big success, with over $10,000 raised and 300 walkers. We were so pleased and blessed by the experience.

Ramona had a heart cath today. They performed angioplasty in three places in her right branching pulmonary arteries. Two were moderately improved and one was minimally improved. We’re pleased with that result. Her sats have not risen this time and there is a chance that the limiting obstruction to the blood flow in her lungs is now the conduit she had placed in June 2007 and not her pulmonary arteries. This is good and bad news: On one hand it is encouraging to know that she may be able to tolerate more blood flow to her lungs. On the other hand, they would need to do another open procedure to replace the conduit, and there might not be much more they can do by cath to improve her oxygenation. This is all speculation of course and we won’t be doing anything while she is doing so well from a clinical perspective.

She is in the PICU now, she came back from the OR intubated and she will remain that way until later tonight. Hopefully they will be able to safely extubate her and she will be discharged tomorrow. As she gets older, there are new challenges. It’s wonderful that she is so verbal and expressive and independent, but hearing her say, “I want to go home, I don’t WANT any pokes!” is heartbreaking. She has been waking up quite a bit, breaking through the sedation and gagging and coughing pitifully. It’s so sad.

So let’s get that tube out, get her better, and go home! Andy will spend the night with her and I will return in the morning to put the discharge smackdown on the rounding doctors. Here’s shot of Ramona that Andy took one morning first thing. She’s the best.