Sunday, March 30, 2014

Menu

We heard the menu just days after his discharge from the hospital. At the pulmonologist's office, we sat with Dermot, giving the nurse any information she requested.

He walked in with a calming authority that I remembered from 5 years prior while in the hospital for a nine day stint. I trusted this man. 30 years experience showed by his ability of direct eye contact, and honest opinions. This was not his first rodeo. He spent the next 45 minutes explaining the pulmonary system to us and what happens to a child when it isn't functioning properly.

I heard the words limited, constricted, suffocate, aspiration and reflux.
Not particularly in that order, but ten weeks later those are the words that stick out. He made a point to ask me again if I had made an appointment with palliative care. I had not. He encouraged me to do so. "I thought that was just for kids that were suffering from chronic pain?" I asked. "no, they also handle putting together a plan for Dermot's future." he answered. I made a conscious note to tuck that comment far away in the back of my thoughts.

Time has passed, another round of antibiotics have been needed to ward off a recurring bout of mucus.As I was on the phone with his nurse six weeks after the visit she reminded me of the "menu" the doctor gave us. She suggested the antibiotics were only a bandaid for a larger problem, I agreed but wasn't allowing any conversation of the next item on the menu.

You see because of Dermot's extremely low muscle tone that affects his entire body, he has reflux. His food comes up into his throat, pools there and then, he aspirates it into his already compromised lungs. Over a matter of a few weeks, an infection occurs and the coughing begins. The mucus, from the coughing, pools in his throat and he aspirates that too. I feel as if I should draw a chart...

The antibiotics clear the mucus away for a few weeks and then it starts all over again. There are other items on the menu at the pulmonologist's office that we are welcome to try, but all of them come with side effects and risks.

A G-J tube was mentioned, but then we'd have to have Dermot hooked up to his feeding tube at all times. His food would need to be administered at such a slow rate because it would bypass the stomach and go directly into the small intestine bypassing the stomach all together.

Then there's some surgical procedure where they would readjust the angle of the stomach to reduce the reflux, but that major surgery and would not offer a guaranteed fix.

The next item on the menu is too expensive and unrealistic to think of right now so we return to the antibiotics for now.

Just a few weeks after our last round, the mucus is back, again.

I tell you all of this because, since the last conversation with the nurse, I've been a bit off.
Short tempered, quick to judge myself and those around me.
Filled with fear. The fear manifests itself by trying to hold on to some sense of control.
Shopping WAY too much, indulging in the chocolate covered caramel corn almost every night. Being overly concerned with my weight. Yelling at my boys a little too loud and not taking stock of all the good things I have.

And monitoring all of you. It's day two of spring break and  I am very aware of all of you who are lucky enough to travel somewhere with your entire family. I know that isn't a luxury I have anymore and I am sad about it.

This menu sucks, I wish we could go to a different restaurant.