tracheostomy

All in all, a good week.

Today, after a morning of various therapies, Dennis was helped into bed and got a much needed nap. As I watched him sleep, it was clear to me that he has improved. Even his appearance is more calm, less anxious, peaceful.

The biggest change came on Wednesday morning when respiratory therapy came into the room and swapped his trach out for a smaller, less irritating Jackson trach. When plugged, it does not allow air in or out, making the breathing experience about the same as not having a trach at all. It is still there if difficulties arise, but if all goes well for at least 48 hours, it is safe to remove it and let the tracheotomy heal up. There have been no difficulties. Saturday morning the trach is coming out and Dennis is so excited! It was the first thing he told me when I arrived this morning.

His voice has been more clear and easy to understand.

He has not needed suctioning to clear his airway.

He is moving his head and neck more, keeping a more normal position.

The progress on the physical therapy side is slower. He has continued to have low blood pressure when sitting and using the standing machine, making it hard for them to get him strong for those activities. Several times they have cut the session short and returned him to bed to rest. There is progress, but because Miller Dwan is an acute rehab facility, and Dennis’s problems are more chronic, there is once more talk about moving him to a sub acute facility to give more rest time to get stronger. This makes me nervous, but I am grateful for all they have done, their good communication with both the husband and me, and the excellent treatment he has had.

They wanted to have the trach out before they sent him elsewhere, and I have asked if they could also get him past needing the feeding tube. I am hopeful they will keep him another week. Social services will start looking for a facility closer to our home that could take him. I will start preparing our home in case there is no good place available.

In all this, I am not going to waste time and energy being fearful about problems we don’t even know we have yet. I want God to know that I trust him to work things out, when we have the need. I believe he always has a plan for our ultimate good. The only difference from day to day is that sometimes we see how the plan is good, and sometimes we don’t see – yet. His plan does not require me to be “in the know” at every step, and I clearly am not…

Sayings:

Nurse: “I need to take your blood pressure. Can I have this arm?” (the left one that he has trouble moving at all)

Dennis: “Yes, if you give it back when you’re done. I hardly use it anyway.”

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.

Multiple days with this contraption can make a lot of soreness

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…)

Hope in the Face of Dementia

Life with an awesome guy battling Lewy Body Dementia

Progress Notes: Week 2 in Rehab

Surgery – the Second Assault