Category: #phelanmcdermidsyndrome

It is what it is…

33rdchild2 Comments

We live beside a precipice of chaos. Medical mischief pulls us over and spits us back at a pace we cannot control. Our return to normalcy may be gentle, a soft landing, or punched into with new routines to keep Davis comfortable and safe. Odd that the very force which grabs our ankles to tumble us over is also a force capable of reinforcing hope and a belief that all of us will soon smile again. Davis will soon clap when he wakes up in the morning surrounded by we who care for him. We have been here before.

He reminds me this morning after a trip to the ER yesterday, and talk of another life flight, that life is sweetened by challenge. Honed by riding the bouncing bull I decide is his rare genetic condition. #phelanmcdermidsyndrome. PMS will not be tamed, in our experience. Perhaps in the future genetics can be repaired in utero, but in this moment we have what we have.

Yesterday my eyes watered up with the possibility of another life flight and time so far away from the very community I crave when Davis is ailing. The fluid around his right lung was worse than ever. A chest tube would be required to drain the fluid. Rick stood with us as Davis underwent the procedure. The staff set up a room where I could comfortably be beside Davis as he healed. My son is familiar and they knew we came as a pair when he needed to stay in a hospital. Our buddy Deena delivered an amazing meal which Davis and I shared. Davis had his first peaceful sleep in months. He woke with a smile.

I have simple sweet gratitude for waking up here, in Mammoth, aware of a potential soft landing at the end of this event. I can picture him soon pushing a grocery cart at Vons, happy to be out with one of us beside him. Who knows, he may even ride his trike this summer on the trails nearby as he regains his capacity to thrive in our beautiful perch atop the world called the Sierra.

Hospital and Home

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Day 5: On your marks, get ready, bake! My form of Xanax. The British Baking Show is about all the intensity I can manage as Davis and I wait for his surgery in the afternoon. I spin the rewind line at the bottom of his SpongeBob show on the iPad because he is down to only three that he wants to see as his frustration mounts and his energy levels wane. The task ahead will be a bronchoscopy and wisdom teeth extraction. The newly emerging wisdom teeth may be a source of infection as we cannot get a tooth brush to that part of his mouth. He will allow all other parts to be brushed after every meal but the back. Surgery later suggests good dental health except for that area. The bronchoscopy shows no foreign matter causing the abscess in lower right lung. The course of treatment is now to manage the pain from the tooth extraction and antibiotics for a month to heal the lungs.

Post op recovery turns out to be the most difficult he has ever been through as the pain is managed as best as can be. The night involves two hours of quiet in between his distress. The next day he settles with the pain regimen and Rick drives to Reno to bring us home. The ride and evening are uneventful. Whew. Until…

At two in the morning Davis is frenetically agitated and in a state I recognize as pain. We had not yet started his oxycodone because he had been so peaceful. We had been using Tylenol. Rick and I debate having him ambulanced to the emergency room for IV pain management when the pain pills seem to kick in an hour after given.

Technically this would all be on Day 6. The reason I even note the days is because they fall into a black hole or vacuum when Davis is in crisis. While the tornado of medical mayhem tears down the structures I crave for peace of mind, after each storm there remains enough foundation to rebuild. I tend to approach my day with more of a sense of what really matters. What best starts me off in a morning, and where does that beautiful sense of peace come from which provides me with deep undisturbed sleep? For Davis I sense he craves his visits to Vons and walks with his care team. His healthy baseline.

This morning as Davis sleeps beneath a blanket of heavy pain management pills, I begin my day identifying the birds around my porch by their songs. Mountain chickadees are easy. Northern Flicker I am learning along with the Brown-headed cowbird. After I note the coo from a Eurasian Collared Dove, it decides to come closer. Birding is another meditative device for me.

Rick and I hang onto our first hug of the day a bit longer. I text Davis’s caretaking team a deeply felt gratitude for helping us provide for our boy the best that we can provide together. I cannot control the manner in which the rest of Day 6 will unfold, but I can soak in what is precious in this moment. A gentle reminder of the rainbow after the storm.

The dove affirms our new peace.