You may have noticed from my last post, I’m not feeling very inspirational lately. In fact I feel awful lately. A few people have asked if I’m sure I understand Ramona’s prognosis clearly. I do I think. I’ve gotten clarification from every cardiologist, nurse practitioner, nurse and doctor I can get my hands on.

Which is not to say that they don’t all express the same information in slightly different ways. One person may say, “She has no more surgical options and everything we are doing for her here you can do for her at home”. Another may say, “We don’t know if Ramona can grow those arteries, you should have her home with you and enjoy your time with her”. But I think I have the facts straight. Ramona’s only chance at a long-term future is to grow her arteries so she can qualify for the next surgery. We can make her comfortable, feed her well and love her, but the rest is up to her. She can’t stay at the hospital long-term. That would put her at an increased risk of infection and not allow her to grow and thrive like she may be able to do in a home setting.

Someone made the comment that it sounded “dire”. It is pretty dire. They have done so much for her, saved her life, stabilized her, but they are out of options for now. I think maybe in my attempt to be hopeful I haven’t made it clear how serious Ramona’s situation is.

But it may be also that I’m not feeling very hopeful today. I don’t know how else to say it but I feel poisoned with worry and dread. My body feels weak and sick, my mind is restless and spinning and my heart feels icy and dark. I’m hoping that when we get Ramona home today, we will see that there will be joy in this time together.

Thank you for all your thoughts and ideas, we appreciate it so much,

Jane