My Son's Best Advocate

Ronan's GI doctor's nurse called me early this morning to inform me that they were going to place a PH probe on August 4th along with Ronan's esophageal dilation. This was unexpected because last time they placed a PH probe things went very wrong. Ronan was sent home for 24 hours with the PH probe placed in his nose and down his esophagus. His esophagus is extremely sensitive and closes with the slightest irritation. Around eight that night his airway did just that and combined with his apnea he stopped breathing and turned blue. I got him back but we had to take an ambulance ride.Now after knowing all of that they wanted to place the probe yet again and send him home. On top of that the last test showed inconclusive because he didn't want to eat or sleep with the probe in place so they could not tell his normal reflux pattern. The whole point of the probe is to see if his reflux is severe enough for surgery. But his surgeon said that we know he is having severe reflux because of his random choking episodes and the fact he's having to have so many frequent dilations. Also Ronan's Pulmonologist already told me the PH probe test isn't really accurate.

I was taken of guard when the nurse mentioned the PH probe that I gave a very weak protest. After calming down I thought more rationally and called his doctor back. I told them that either they would place the PH probe and admit him for the 24 hours it has to be in or it was not going to be done at all. Basically if the test was an absolute must they were going to watch him the entire time. I believe this was a more than reasonable compromise. I received a call shortly after letting me know the test wasn't that important and they were just not going to do it. I'm glad I spoke up now knowing that a not so important test could have put my son's life in danger.

Ronan was feeling better today. No fever but was still pretty sleepy. He took a couple of long naps. During those times Inara helped me unpack. Since he slept so much she was the only one I got pictures of today.

Overall the lesson I learned yet again today is I am my son's best advocate. This is something another mom told me shortly after Ronan was born. Her son also has Down Syndrome. At the time I was upset because someone had something wrong about Ronan. I was in tears and these are the words she encouraged me with "You will learn to become the best advocate Ronan will ever have. You will become tough and strong. You will learn to not waiver and allow unfair treatment just because your son is perceived as different. You will learn how to fight for him and you will learn to be successful at it." I have never forgotten her words. If I don't fight for him who will. I know him best and I know all the tiny details of his medical history (doctors don't always remember) if something doesn't seem right I need to say so.