(Sorry for taking so long to post, but here it is!)
We had some good news today at the cardiologist as well as conflicting stories. When Clare's doctor told me that the Boston doctor did not expect to see Clare back in the cath lab for 2-3 years, I was floored. Utterly speechless. I stammered, "Are you sure?" She smiled at my disbelief and read me his letter. Clare's other Boston doctor, however, feels it is more accurate that Clare will be back in 6-12 months. I am guarded in my optimism of Clare's actual timetable, but I am daring to hope that it is the longer stretch.
After another exhausting cath procedure and two long post-cath weeks, I was prepared to hear that Clare was going back in December. After enduring four caths in her first 11 months of life, she had a 15-month reprieve. After her cath in June, though, when we heard they wanted Clare back in three months, I feared we were back on the road of caths every three months. That there is the very real possibility that Clare is good to go until at least 2008 fills me with hope again. Shawn and I have been very worried over the state of Clare's heart lately. I have no false view of reality that Clare is better. I know her heart is not "fixed." I know that by the doctor saying 2-3 years, he is saying that he has done all he can for now and he expects his "repairs" to hold for that long. But I also know that every time Clare goes under anesthesia and the doctors run their catheters through her heart, her risk of "problems" increase dramatically. Anesthesia is so risky for Clare, that her doctors would not even put her under unless the risk of NOT doing something to relieve the build-up of pressure in her heart is much greater.
So my glimmer of hope is there. Clare does not return to the cardiologist for another echo for three months. In six months, she will have a lung scan performed to check how her output looks. Clare's cardiologist does not want Clare to have the renal MRI right now because she would have to be under anesthesia. We are going to continue to monitor her blood pressure at home to be sure it continues to stay steady. At least then we know that, even if her renal arteries are narrowed, they are not getting worse.