Chapter Twelve: New Room, New Issues
Moving to a new room meant leaving the constant care of one full time nurse to a situation of one nurse for two patients. Right before leaving the downstairs critical care Steve had thrown up while lying flat on his back. His family and I were in the room with him and quickly responded by sitting him up and calling for the nurse, who had been out of the room making arrangements to have him transferred upstairs. If we had not been in the room with him, he would have aspirated. Because his throat muscles had atrophied and he couldn’t swallow properly, this became a very dangerous situation. His bed was supposed to be raised at all times to prevent this, but it had been lowered in preparation for the move. He was now going to be in a new room where the nurse may be gone a small amount of time while checking on their other patient. This made us very nervous, since we still weren’t able to spend the night in his room with him.
Fear usually accompanies any kind of change, and that’s what we were experiencing. We made it to the new room that night, met the new nurse and tried to get used to a new way of doing things. We had grown to love and trust the doctors and nurses of the downstairs ICU, and we were going to miss their constant care and attention. We had begun to feel safe there. We didn’t know these doctors and nurses and they didn’t know us or Steve’s journey. They had a whole new way of doing things here. Steve’s mom, sister, dad, and I left the hospital that night more than a little nervous.
Not only were we getting used to a new way of doing things on this upper floor, but Steve was, too. He was now aware enough to recognize us when we were in the room with him. The hallucinations were still taking up most of his awake time, but he was beginning to be a little more aware of his body and the room he was in.
He still couldn’t move. HIs body was still frozen by the atrophied muscles, so physical therapy began immediately. The therapists would come in daily to exercise his arms and legs, and then eventually sit him in a therapeutic chair. He needed to get out of bed and moved often so pressure sores wouldn’t form. If he got a pressure sore, there was a possibility it could become infected. An infection could send him back to the lower level of ICU. This could be life threatening, in his case, since his immune system was being suppressed to treat the lupus.
His inability to swallow effectively was also now becoming a concern. We had to constantly suction his mouth so he wouldn’t choke on his saliva. We were told he needed his throat muscles to work as soon as possible so he could begin to eat. Food was going to be the best nutrition his body could receive and he would heal much faster by eating his nutrients instead of receiving them through a tube. These were the new issues we faced in Steve’s recovery. If they didn’t improve in a certain amount of time, he could become critical again.
The speech therapist was in charge of Steve learning how to swallow again. In order to evaluate his swallowing skills she had to give him a small bite of pudding to see how well it could go down. He failed the test immediately. Because of this failed test, he was not allowed to have any food or drink indefinitely until he could effectively swallow it. If it was swallowed incorrectly, this could cause him to aspirate and he could develop pneumonia, which would cause him to end up back in the most critical part of ICU. Every day it seemed there was another big hurdle to cross to keep him safe and out of the lower level. It felt like we were always racing against the clock to get him to the next phase of healing so he wouldn’t end up down stairs again.
Steve now had a tube that was inserted in his nose and ran down his throat and into his stomach. He received his nutrition this way. The tube irritated his already very sore throat, so he was always trying to pull it out. He had to wear hand mitts to keep him from unconsciously pulling at the tube. It became a daily struggle to keep his hands away from the tube. Even if he couldn’t pull it out, he still tried to knock it out. Hallucinations, along with incredible discomfort made him a very demanding patient. There was never any peace in this new place. We were always on watch to prevent Steve from hurting himself by unconsciously struggling with his new awareness of his very sick body.
It had been difficult for the technician to get the food tube placed properly in Steve’s stomach. It was a constant conversation among the nurse and the technician. Because of Steve’s pancreas inflammation, the food tube couldn’t be too close to the pancreas. It usually was. Steve solved this problem one day by pulling the tube out of his nose. His mittened hand hit is just right and it came out. The next solution was to surgically insert a food tube right into his stomach. Surgery was scheduled immediately, and he had a new stomach tube the next morning.
These were our new tedious days on the second floor. Days that were packed with activity, tests, evaluations, and Steve’s new awareness of how miserable a body can feel. It was work. A lot of work. And, we were already so tired from our weeks of living on the edge with him. I didn’t know how long we were going to be in this new place, but I prayed it wouldn’t be too long.