Yesterday I called Peyton's pediatrician's office to make sure they'd gotten my fax with the sleep study report. The nurse called me back and left a message to say they had and that, oh, by the way, your appointment with Dr. x is scheduled for 2/29/08 and 1:30... My thought was what kind of doctor is this??? So, I called back and she said, oh she's a cardiologist. Well, I nearly died because no one had mentioned to us that Peyton needed to see a cardiologist! Since she had no information at hand about what this appointment was for, I had to hang tight and wait until the afternoon when the pediatrician came in.
Around 1:30, the doctor called me and explained that the doctor from the sleep study probably referred Peyton so they could establish a base line for Peyton's heart. As she explained to me, she (the pediatrician) had never seen a sleep study as bad as the one Peyton just had, and with central sleep apnea, over time there can be damage to the right side of the heart as there is extra stress from the lack of oxygen. Ok, so I can understand the visit now, but that issue had not ever been explained before so it took me quite by surprise.
That conversation then evolved into one about Peyton's future. The doctor said as much as you want to be optimistic (and we still try to be), she said the last few studies done on her recently have not been encouraging signs for her. We discussed how with no diagnosis of a syndrome yet we don't know what she has and, therefore, don't have a prognosis. I mentioned how the neurologist the other day had mentioned generally speaking that children with neurological impairments often pass away due to respiratory issues. So, you can gather where this conversation went. We just don't know what Peyton's future holds or how long she'll be with us. So, in the meantime, we'll just keep on doing what we're doing because that is what is best for Peyton. I always feel guilty about having to work while someone else takes care of her during the day. This conversation yesterday certainly did not help in that regard.
The doctor wants to get a few more specialists involved to see how we can help Peyton but she's afraid that Peyton's development may not improve much more beyond where she is right now. She said that any positive things that are happening (like the feeding I mentioned the other day) should be considered little miracles for Peyton. I keep hoping that one day she's going to sit, crawl, stand, and walk, but I have felt for a long time now that walking may be too lofty a goal to set for Peyton. That said, I will NOT give up on her.
So, that uplifting conversation with the doctor rounded out what I would consider to be one of the worst January's of my life. Now I wonder what February has in story for us! I'll keep you posted.