I am driving to the poorer section of the community. There is the apartment, the only one with a handicap ramp and a large sign on the door: NO SMOKING-OXYGEN IN USE. The walkway is shoveled from last night's ice storm; no one is outside in the frigid cold wind. I knock on the door and hear Mrs. D say, "Come on in." (Mrs. D had been taught to take care of my patient, her son Robert, before his discharge from the hospital. Mr. D had been present during the teaching sessions yet was very hesitant to be the main caregiver for his son, who has cerebral palsy, a tracheostomy, is on a ventilator, and is fed by a gastrostomy tube.)
As I enter Robert's home, his mother greets me with a smile and says, "How are you? The roads are slippery, be careful while visiting your other patients." Mrs. D is dressed in jeans and a sweatshirt. She is baking a chicken "for the family." The kitchen floor has just been mopped for the second time today because the grandchildren often come in with wet feet from the winter.
Mrs. D offers me a chair to sit down and chat for a bit before I go into Robert's room. She tells me of her concern that Robert will get pneumonia this winter: "You know it is his first year home with a tracheostomy and ventilator." We review how Robert is doing and the precautions that can be taken to protect him. Mrs. D is willing to do all she can to help her son. She also verbalized that Mr. D had gone out and should be back by now; he should also not be out on the roads in this weather!!
As we enter Robert's room, Mrs. D gives Robert a hug on the forehead. Robert gives her a look that per Mrs. D means that he wants his nose scratched. Mrs. D does this ever so gently. Now a piercing "beep, beep" begins; it is the high alarm on the ventilator. Mrs. D suctions Robert via his tracheotomy: thick mucus secretions are withdrawn. Robert smiles at his mother, and his mother smiles back. She does the entire task in a competent, matter-of-fact manner.
I do my physical assessment of Robert and tell his mother his lungs are clear. His skin is in beautiful condition, and he looks fine today. Although his mother is the primary caregiver, Robert gets "shift" time with nursing each night.
Where is Robert's father? Every time I have visited, he is just leaving the house, talks briefly to the nurses, or is watching TV. Why doesn't he help more? This is the lesson I learned[horizontal ellipsis].
It is a cold night in February. Mrs. D has gone to a bingo game at a local fundraiser. I am on call. Mr. D pages me: "I cannot stop the ventilator from beeping[horizontal ellipsis] Please come check it. The power is out, and I have the generator hooked up." I go to the home, and indeed Robert is in trouble. His chest is moving very fast and irregular. His color is very pale-and that irritating "beep, beep" from the ventilator seems louder than ever. I can hear a whish-like sound from the tracheal stoma. Aha!! The cuff on his trach is deflated-easy enough to fix. Right? The cuff will not inflate!! Robert is afraid. His pulse is increasing, and the ventilator alarm is beeping. Now the trach has to be changed!! I have never changed the trach without the physician present in the home. I call the rescue squad to transport Robert to the local hospital. They will come, but it will be a while because all of the rescue ambulances are busy at a multiple-car pileup on the highway.
Robert needs his tracheotomy changed now!! So Mr. D and I do it together. He suctions Robert while I change the cannula. It goes well. The irritating beeping of the ventilator stops, Robert's pulse lowers, the movement of his chest is regular, and the "beep, beep" is silenced. His father hugs him tight and smiles at me. He said, "We did it!! He is okay. Thank you."
His father was awesome!! He had hooked up the generator, suctioned his son, and still thanked me. I learned that very moment that my judgment of him had been all wrong. He was part of Robert's care. He was the silent hero. Together Mr. and Mrs. D could give unconditional love to their son and keep him home where they wanted him.
This experience has not left my heart since that cold February night. The winds were cold, the night was black, but the love of the parents for their child was warm, bright, and true. Never again will I accept that "things are the way they seem!!"