Moving On and Out of ICU

“I think I saw a green cat, sitting on my shoulder. Was that a dream or a hallucination?’. Maybe, I thought, or it could have been the little guy filled with rice (as a heat compress) that Esther bought and gave to you when she visited.

Dennis was in the ICU for 27 days. I felt like I was there too, and I was, nearly every day. Of course, the respiratory arrest and having to go on the ventilator was the worst complication of his stroke. The other important issue was his blood pressure, which was probably the cause of his stroke. That had to be stabilized to prevent another brain hemorrhage.

Unfortunately, unstable blood pressure has been one of Dennis’s problems for a long time, and was probably one of his first symptoms of Lewy Body Dementia. The IV med he was given right away, worked very well but as the amount was reduced, he would begin to have episodes of hypertension again and it would be increased. Eventually he was started on an oral med that was crushed and given through the nasogastric tube. When that didn’t take care of the spikes he was put on a second oral med. Then the amount of the first med was doubled. By his last day in ICU he was taking Norvasc 10 mg, Coreg 6.25 mg, Ismo 10 mg, Cozaar 100 mg, and a diuretic, Lasix 20 mg – all of which were for his blood pressure. Pretty impressive for a man who doesn’t like to take pharmaceuticals. He still has a spike now and then, but it was decided that he could have a higher “normal” as long as it didn’t result in 225/125, like it was on the night of his stroke.

Having weaned off the ventilator and having stabilized blood pressure readings for a couple of days, he was given a second swallowing evaluation. He didn’t do very well. That means he will be a long term tracheostomy patient to protect his lungs. It means it is still not safe for eating or drinking, two of his only remaining pleasures in life. But medically he was ready to move to a step down unit.

Every change causes some measure of anxiety. For me, the worry was that he wouldn’t be able to get help when he needed it on a unit with higher census and less staff. He still wasn’t able to move either arm enough to find a call light. He wasn’t able to move himself in bed at all. He couldn’t turn his head to see anything he tried to locate, he couldn’t speak unless someone deflated his trach cuff and placed the PMV valve. He was often lethargic, but becoming more aware of aches, pains, stomach rumblings and the need to cough.

I was called one night at home and told that he had been moved to a medical unit on another floor. The nurse working with him informed me that he was on the same kind of monitoring as in the ICU, and had a private room with a camera that allowed supervision at the nurse’s station. It actually sounded pretty good to me, and I was glad that he would be in a private room where it would be quiet and less confusing. I visited the next morning and was very pleased with his proximity to the nurse’s station and the attitude of the staff taking care of him. We practiced using a squeeze ball call system until he could work it correctly, and the PA directing his care gave permission for him to have the PMV valve in as long as he could tolerate.

There are always more mountains to climb however. The PA also told us that his inability to manage his secretions meant that he would need a more long term solution to nutrition and meds. The nasogastric tube could be replaced with a PEG feeding tube going directly into the stomach. This might also help his ability to swallow since it would mean one less tube going down his throat. He and I both felt this would be an improvement, although it will mean another exposure to anesthesia. It will take place tomorrow. I hope it won’t put him back into lethargy and brain fog, since we have just begun to make progress to more wakefulness and clarity.

In the back of my mind is the question of where he will be taken care of after hospitalization. They are already talking about nursing home placement and I know this is not going to be fun.


Surgery – the Second Assault

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…)

ICU Delerium

Dennis was admitted to the Neuro-trauma ICU of St. Mary’s Hospital in Duluth MN, 90 miles from our home in Hayward. It was past visiting hours but after they got him settled in they let me come in and see him. I watched them do neuro checks on him. He was weak on the left side but there was movement, and his face didn’t seem asymmetric. He was joking with the nurses, telling them all about how it felt. He was still on IV medication to keep his blood pressure in a safe range.

I stayed overnight with a friend and was back the next morning. Not much had changed as they tried various meds to keep his blood pressure low. Another CT scan showed there hadn’t been additional bleeding from the night before. The free blood was kind of migrating around though, like a bruise that changes shape as it ages.

Thursday, still in ICU, Dennis was more lethargic. He would open his eyes if asked but he looked sick. They were having a hard time with his blood pressure and giving him higher doses of IV med, as well as fluids and electrolytes. Friday when I visited, I had a hard time getting Dennis to wake up. He didn’t interact with us. It was like he was sedated. It was explained to me that this was a common progression as inflammation was often peaking on the second and third days.

That night back at home, I got a call from the hospital. Dennis had been having a hard time breathing. And then, as they were suctioning to clear his airway, he actually stopped breathing. They intubated him and put him on a ventilator. I drove that night to my friend’s house again, wanting to be close in case anything more happened. As soon as visiting hours started the next morning I went to get the story. This was day #4 in the ICU. He looked very peaceful now that breathing was not so much work.

I couldn’t begin to imagine what was going on inside his head. He was somewhat more alert, opening his eyes a lot more on days #4 and 5. He could still follow orders to move fingers and toes. The biggest difference now was that he could not talk, being intubated. I could tell there were things he wanted to say but it was getting very frustrating.

As it got closer to our family reunion, August 4 – 8, people were arriving at home. I spent part of several days at home, but was at the hospital for hours every day. There was not much I could do except let the staff know, from experience, what Dennis was like and what I thought he wanted. There were conversations about resuscitation, feeding tubes, and DNR status that were kind of scary, but fortunately I knew Dennis wanted to have every chance to live.

On day #7 my brother Gary and Lyn went with me. It was upsetting to them, and frustrating to Dennis. He was very tired and we didn’t stay very long. Tubes and wires everywhere. Alarms going off. Phones ringing. Confusion of loud voices from the other half of his semi-private room. We were starting to understand the term “ICU delirium”.

All of these (and more) connected to poor Dennis.