Sorry I have not had time to post sooner, but things have been a little crazy for us as a family.
I wanted to explain in a little more detail why Lily's open heart surgery was cancelled!!
Our cardiologist called us Friday morning (4 days before her surgery), as soon as I answered and heard his voice I knew something was up, usually his nurse practitioner calls us, unless it is to discuss something important.
As you know the reason Lily has not had surgery so far is because she had severe pulmonary hypertension, you also know the exciting news that it had decreased to a level where her cardiologists felt she could have the surgery and there was a high chance it would work.
As well as the hypertension there is another number they follow called the pulmonary vascular resistance (PVR). A normal healthy persons PVR is 2 or less. Lily's initially was 6 (high) and decreased to 3 which was fantastic.
When the team of cardiologists met a few days before her surgery to discuss her case one more time, two of the cardiologists bought up the fact that the PVR was 3 when ideally they would like it closer to 2 to give the surgery more of a chance to be successful and to put Lily at less risk. Their thought is that Lily is doing so well so why rush into surgery when we can treat her and try and get the PVR down and give her a better chance of a successful surgery.
Of coarse we are in agreement with this, and of coarse it would have been nice to have had this plan a little sooner, but we can't change that, so now we just go from here.
We don't have an exact plan yet, but she will be put on some other medications to treat the PVR, and then probably reevaluate in 4-6 months from now.
Meanwhile we get to enjoy Lily, I know if she understood what was going on, she would be thrilled to be not having cardiac surgery right now!!
We just wanted to thank you all for your support, kind words and prayers for lily and us, it means more than we can express.
