Waiting

Today is one week since we've had a diagnosis and I still have no answers.

I called the family Dr to check on x-rays and the nurse put me on hold for over five minutes. Every thought went through my mind. "Am I on hold because they found something and aren't sure how to tell me? Its been almost a week since the x-rays, they must have them by now. Why are they taking so long?" Finally a nurse gets on the phone and tells me that have not come back yet. She kindly says the Dr is now on vacation, but she's going to call the hospital and have the Nurse Practitioner look at them. I respond with the diagnosis and explain its something difficult to just "look at". I have never heard of that diagnosis (not even being able to repeat Non-Langerhans Cell Histiocytosis). Welcome to the club lady. I spend about five to ten minutes explaining what it is, even though I really still don't understand what it is. And, by the time I am done explaining I am in tears. She sounded as if she was too. She promised to call and check on where the x-rays are and call me back.

I then decided to call the pediatric dermatologist we were waiting to hear from, that Dr Mostow referred us to. The voicemail says they are at University Hospital, not the Cleveland Clinic that we thought. Imagine that on a day our worlds changed, we got confused. Anyhow, I had to leave a message for them to call me.

Now I sit here waiting for answers and to tell you the truth I'm about to lose my mind.