This may be more detail than you want to know, but I want to remember and this is how I do it.

Toward the end of the second week in ICU, after nine days voiceless with the endotracheal tube and the ventilator, it was becoming apparent that Dennis’s respiratory problems were becoming long term. To prevent damage to his vocal chords it was recommended that he undergo surgery for a tracheostomy.

Having heard many scary stories of what general anesthesia could do to the mental status of Lew Body Dementia patients, I was worried. But at least the surgeon listened well to my concerns, so we went ahead and had the surgery. It took longer than planned. The surgeon did say there was a bit of trouble but the surgery was successful. Dennis’s face was now free of the tube in his mouth and all the trappings to hold it there. Red abrasions on his cheeks and a very dry mouth would have a chance to resolve and heal.

However, the wound in his neck and the tracheostomy tube were pretty brutal looking too.

One of Dennis’s main problems was that the stroke damaged his swallowing muscles. Secretions like saliva were not being swallowed down his esophagus like he thought. They were going into his trachea and his lungs and there was danger of pneumonia. He needed frequent suctioning of the trach tube and of his mouth. Fortunately, he had a good, strong cough, and they started him on antibiotics to prevent pneumonia.

They tried several times in the next few days to wean Dennis from the ventilator. Each time it wore him out and he could only tolerate a few hours without the machine. Eventually he was able to use less help – the vent was used more like a CPAP. He would initiate his breaths but the machine would do the work of delivering the air. By day 24 he had been off the vent for 48 hours and was only getting humidified air and a little bit of oxygen.

One of the best things during these days was hearing him talk again. On day 20 in the ICU they plugged the trach tube for short periods of time so he could speak to me. He wanted coffee – big discovery. One of the things about his brain injury is that he doesn’t realize the seriousness of what has happened. He talks about wanting to eat and drink, not realizing that he is being “fed” through a nasogastric tube. I spent much of my time with him feeding him ice chips and then suctioning them back out again after they melted.

Things he has told me:

“If Ryan (son-in-law) was here he could help me stand up.”

“Untie my hand so I can hold a cup.”

“Sweet corn and tomatoes!” (after talking about garden with his brother.)

“My butt hurts.”

“More ice chips.”

“How is _____? (He remembers and asks about everyone.)

“I love you.”

“When are you coming back?” (Aww…)