Wednesday, January 13, 2016

How it is.

I hung up the phone and cried. Cried for the umpteenth time. I got what I wanted from the phone call, but I'm not happy.

She was telling me how it was. She was telling me what to do next. She was asking, yet again if I was using the respiratory vest, when he was well. I'm not an idiot. I know you were shaming me. I know you have guidelines and protocols to follow. As do I. He has mucus, that means antibiotics. Plus extra nebulizer treatments and Predisilone and suctioning and respiratory vest and frequent position changes. I know what to do. Believe me, I know what to do.

So my one comfort was taken away this morning. Dermot's pulminologist office has always been my reliable source for antibiotics when he is in respiratory distress. I call, they prescribe, we hopefully get better. But not today, today the young nurse tried to tell me, how it was going to be. She tried to tell me to go two more days before we intervened. She wasn't going to win this fight. Not today.

I told her that I've been dealing with his condition for over nine years and that he doesn't recover on his own. I reminded her that I wasn't looking for a prescription for morphine, just Augmentin. I told her that her suggestions alone weren't going to help Dermot. Because they never have. But I was crying while I told her. Dammit! I'm tired of crying to health professionals who try to tell me how it is. I know more than anyone else "how it is". I told the nurse that I just lost my one safe place to call when Dermot is ill. Never before had I had to fight for meds from them. Now that sense of safety is gone, probably left when Dermot's pulminologist left for his three week vacation...

Here's the kicker. I might be wrong. I don't know everything. His cough might be from our need to increase the dosage on his seizure meds that causes more secretions and more drowsiness. Perhaps we could decrease the dosage and his breathing would be better, but then would the cluster seizures would come back?

This is the spot that makes it almost to much to bear. When I have to decide what it is. When I have to decide which of Dermot's medical professionals I should call today to see if they can help.

The lung guy who's nurse decided to ruin my day? The brain guy who's goal is to stop Dermot's seizures? The gastro guy who's in charge of his feeding tube? The new pediatrician who he's seen a total of three times and who promised to take a lead role in his health care? The Bone guy who's main goal is to operate on Dermot to straighten his spine? So many doctors are responsible for bits and pieces, no one doctor sees ALL of Dermot. That's my job, of which I am grossly unqualified and underpaid for...

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