The twins are about 20 months of age. One has an apparatus called a "trach" in his neck - this is a little plastic tube that inserts into his trachea with is attached to a ventilator as if he tries to breath on his own his oxygen level will be too low. His ventilator requires electricity to run. So, if the power goes out, say in a storm... He also has what is called a "G-tube" sticking out of the left upper part of his abdomen which connects inside his tummy. He gets all of his feeds this way as he can not feed by mouth. He can not sit up. He can not communicate expect to occasionally cry. The ventilator and machine that measures his heart rate and oxygen level goes everywhere he goes.
He was sick at the time of our interaction. There were copious secretions coming out of his nose, mouth, and trachea. He had been on antibiotics already, but was getting worse. The mother was telling me that every time she calls the pediatrician, he just gets put on antibiotics, and every time she calls the specialist, she gets sent to the ER. She has now bought herself a stethoscope so she can try to figure out how to assess him. She is tired of her baby getting poked and prodded. She was holding back tears our entire conversation while suctioning out his secretions, cleaning him, changing his diaper, and perpetually quieting the beeping from all of the machines that were falsely alarming.
To add to this, there is his twin brother. He is breathing and eating regularly, but at 20 months, has no words and barely crawls. He has to be constantly watched (as any 20 month old, except that his progress is slow) and that responsibility falls to his Dad. It is very difficult for either parent to work, so in addition to the obvious stresses above, there is also incredible financial stress, not to mention their isolation from friends (they are terrified someone will get their kids sick) and innumerable other stresses.
Despite all this, in our brief interaction, the intensity behind this mother's conviction to give the best care possible to her children was so, so apparent. She is so determined and so strong. As I keep her in my thoughts and hope for the best for her and her family, her strength gives me renewed strength from a refreshed perspective that getting my three perfectly healthy kids out the door in the morning is a stress I can live with and be grateful for.