“This is the twelveth blog in the Caregiver Series. This is a blog about the continued recovery from a double lung transplant.” If the Caregiver Series can help just one person going through the same journey, I will be grateful!
My husband was moved from the Intensive Care Unit to a Step Down Unit that is exclusively for lung transplant patients. I arrived at the unit in the morning on the first day to the nurses informing me that overnight he was wiggling in bed and he pulled out his stomach tube for his tube feedings. They got it back in and the tube feedings resumed.
Are you kidding me? On the very first night? I hope this isn’t an omen for things to come!
The first day was filled with physical therapy, occupational therapy, and speech therapy goals along with oxygenated air and ventilator goals for the weeks to come. He will have physical therapy 6 days a week, occupational therapy 4-5 days a week, and speech therapy as needed until he gets on solid foods. The doctors wanted him watched closely as his heart rate was elevated due to the move from the ICU to the Step Down Unit.
At midday, the stomach tube fell out (I guess it wasn’t in as securely as they thought). They tried to put it back in and it didn’t work which caused a great deal of pain. They tried again using a smaller diameter tube to get the tube feedings going again. I waited in the hall as the look on his face was very painful!
Occupational Therapy came in and ask him if he wanted to wash his face and brush his teeth. The resounding answer was NO! The compromise began and the decision was to walk to the bathroom and using the facilities. You don’t a;ways get to choose! The highlight of the day was when the granddaughters finally got to visit since he was out of the ICU. Definitely brighten up his spirits!
Swallow Test
Prior to the surgery, he was experiencing dysphagia which is difficulty in swallowing. Since he was in the ICU unable to eat or drink, the swallowing muscles have become lackadaisical so a swallow test is performed to ensure that when you start to drink that the liquid does not go into the new lungs.
During the swallow test, they insert a endoscope with a camera through your nose and they watch on a monitor while you drink liquids that are thin, thicker, thick, and solid foods. They used milk, apple juice, orange juice, cranberry juice, applesauce, and graham crackers. They use a thickening agent in some of the liquids. Except for the crackers, a green dye is mixed into the liquids so you would be able to see better on the monitor.
He passed with the thicker liquids, however, did not pass for the thinner liquids or the solid foods. By passing the swallow test, this allows you to start receiving drinks and then solid foods. While this was disappointing, they gave him exercises to perform that strengthen the swallowing muscles and they would try again in a few days.
The next week, Speech Therapy set up the second swallow test. We went down to Radiology. As he tried the different liquids, we watched through a monitor behind a wall as he swallowed the different liquids. This time they gave him a barium pill and as he swallowed it, the pill got lodged and he didn’t swallow it. He couldn’t feel the pill being lodged. Going forward, he will have to eat very slowly, drink a lot of water while eating, and lower your chin after each bite. With some practice, the swallowing will improve. Can he eat slow? We will see!
Beware of Phones
Before the surgery, my husband gave me his phone to hold. Prior to the surgery and during the surgery, the amount of tests that are run are unimaginable. We use MyChart for medical tests and visits as many people do. My husband’s phone was buzzing with notifications. After awhile, my daughter and I were curious so we tried to log into his phone by trying to remember his passcode.
After so many times of trying, the phone requires you to wait a certain amount of time before you try again. We keep trying and the phone kept saying wait. Eventually, we have tried so many times that the phone no longer allows you to try. Definitely, a nice security feature! When he was awake from the sedation and out of ICU, he finally asked for his phone. An awkward laugh occurred and I told him that I had a funny story!
Moral of the story: Before a major operation, share your medical information with a loved one!!
Prepping for Home
After two weeks of gaining strength through the therapies, we moved into the last week in the hospital. In the hospital, time seemed to move so slowly until a certain point and then time moves extremely fast! He had his first bronchoscope to ensure that the lungs are intact and no issues were noted. Once that was achieved, the tracheostomy tube was removed and no more oxygenated air! Such a big moment!
After being in the hospital for five weeks, he started to look like a mountain man with his hair and beard. His last Occupational Therapy visit was to shave his head and beard. He looked like a new man with a new life! His physician came in and removed a partial number of stitches and the feeding tube was removed.
At the end of five weeks, he gets his first meal and it looks so good! We will see if he thinks that in a couple of days!!! The pharmacist visits with us about the medicines that will go home with us. There is a lot of medicines to keep track of and the bag is huge. We will also have to track weight, blood pressure, medicines, breathing through a spirometer, and glucose.
Throughout the hospital stay with my husband, there are many noises in a hospital you will always remember. The noise that is the most distinctive are the noises from the ventilator and what they represent much like the sound of an ambulance. It is one sound that I could go without listening to!
Day of Discharge
After 2 weeks in the ICU, 3 weeks in the step down unit, and a miracle surgery, he was ready to be discharged to go home. When I picked him up in the car this was his first day in the sunshine and experienced the warmth of the sun on his face. On the ride home, he was enthralled with looking at the scenery at both sides of the road. He had made it through the surgery and the start of the recovery. The next stage would be 12 weeks of daily outpatient appointments but for today, it is an incredible milestone!!
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