Riley's Road: It's back?!

I've learned a valuable lesson once again this week in terms of our Riley girl's health. While doctors and nurses make mistakes as we all do, nothing they do for a patient is 100% guaranteed...I still place trust in what they tell me, I value their opinion's even if I don't agree or they are hard to hear.

Several weeks ago we were told by a nurse that Riley's CF results were negative only to be told later that day, that the nurse had made a human error and read us someone else's results. It rocked me in a big way. I was angry but trying hard to forgive.

Last week we were told by one of Riley's doctors that her CF results had come back and are indeed negative. We were told the CF could finally be put to rest and never have to deal with it again. Until yesterday.

I always struggle with Riley's doc appointments bc it seems they just get worse. The news, the ups and downs of it all. Yesterday, while at one of the top hospitals in the nations for year after year, I was told that once again Riley's test results for CF had been misread to us. Struggling to control my fury, I listened to what was being said.

1) "We are not out of the woods" as her doctor shared with me. The Delta F508 gene had been detected after all. This particular gene is the most common gene found in those who have CF. The test was done 3 times to confirm that the gene is in fact present. As of now Riley is a carrier for the gene (she can potentially have CF children someday as a carrier of the gene.) She must have a high powered sweat test done next week (never mind the 6 sweat test she has had in the past with no valid result) to get either another positive to confirm she has CF or a negative to combat the gene found, making it so that she doesn't have CF.

2)Our ENT did in fact send his notes to her docs at National Jewish but failed to mention any of the news about the cleft in her voice box he found. He states she needs the reflux surgery ASAP and then we can work more on her ears. Her doc's at National Jewish feel he didn't mention such vital information bc the only way to detect something of this magnitude for sure is to take a camera probe down her throat. Since he didn't do that during her appt, he simply didn't mention it.

3)Riley's pediatrician has apparently turned down the need for the reflux surgery that all of her other doc's say needs so badly to happen. Without the pediatrician's go ahead, it can't happen. We are baffled as to why she would turn something down that we've been told Riley needs so badly, something that seems to be making the rest of her body so sick.

The doctor's God has placed on our path can't seem to agree, to make a move on Riley's behalf. In the 5 weeks since her last appointment we have not received one phone call of a series we have been waiting for (frm genetics, therapists ect). Unfortunately, with active duty military insurance, once you have been referred to a specialists, you can't call and make the appointment yourself. You must wait for that doctor to call you, once referrals have been processed and the doctor is ready to see you.

I'm reminded once again that I must be oh so careful for the amount of trust I put in these doctors. Our hearts seem to stay in a constant ache for our girl. It's so hard to be the parent here, feeling like you aren't doing enough, feeling like you've messed up somewhere along the way.

I ask God why CF has come back again, for the 3rd time. While the doctors clock out and go to take care of their own families, Port and I wrestle with the what if's, the room for human error, the heartache. I have felt fury like I have never felt before. I feel the closest to giving up that I ever have. So what if my giving up results in us not knowing? I have questioned the amount of sanity or sound mind I really have.

I am haunted at Riley's pediatrician's view on the CF issue. She has felt Riley shows CF symptoms since she was 10 months old.

Once again, a turn we didn't see coming on Riley's road. God promises He will never leave. We cling to that today with what is left.