Chapter Fifteen: Three West
By June fourth, Steve had been in the ICU for a month. His mental confusion was beginning to clear enough that he could have small conversations with us. His throat was still very sore and weak, so he still whispered, but at least he was making more sense. I was beginning to see a glimmer of my sweet husband returning. There were still a lot of health issues, but now they were issues involving how the body heals.
I was sitting in Steve’s room the morning of June fourth when the nurse told me that Steve was getting well enough to be moved to a regular hospital room. She told me the move would probably happen in the next day or two. When his family arrived a few minutes later, I told them the news. We were, once again, elated and scared. A new room in the regular hospital wing meant a nurse would check on him occasionally, not full time. We felt Steve still needed full time care. It hadn’t been that long since he had pulled his dialysis catheter out. The nurse assured us he would still get excellent care, even it if wasn’t as regular as ICU care.
With the swiftness of our last move from the first floor ICU to the second floor ICU, Steve was suddenly readied for his new room within an hour after we were told it could be in the next day or two. There was suddenly an empty bed available, so we had to move quickly. We had no time to think about it. We grabbed our things and before we knew it we were following Steve’s bed down the long halls, through the skywalk, and into the next building to a section called Three West. We had finally made it to the third floor, the floor we had prayed for when Steve was so critical. The ICU nurses often told us that once Steve made it to the third floor, then he was out of danger. The third floor represented the last leg of our hospital journey, We should have been happy.
Three West was very different from anything we had been used to. The monitors that displayed his vitals were now gone. They attached a heart monitor to his chest and put it’s pack in his gown pocket. We no longer stared at his oxygen levels or heart rate moment by moment like we had gotten used to in the ICU. All but one of the IVs were gone. He didn’t need them any more. The new room had a door that could be closed for more privacy so it could be darkened at night for the possibility of sleep. The doors in ICU had been glass sliding doors that let the lights of the hallway shine through day and night. It was never conducive to sleep, or rest of any kind. One thing the new room had that excited all of us was a huge window with a breathtaking view of the mountains; those miraculous mountains that Steve had seen the day the giggling nurses had shown him sunlight.
Steve’s new nurse that day was a quiet man who would come and go from the room, barely speaking to us. He went about his chores in a methodical way, seeming very adept at what he knew and how to do it, but not communicating with us much. This was new. We had gotten used to the ICU nurses who were more attentive to us as Steve’s family. This made us miss the comfort of the routine we had become accustom to our month in ICU. We now no longer had the doctors and nurses that knew Steve’s story. No one here seemed to know the depth of what we had been through. Steve was just another new patient arriving from ICU. They didn’t know about his hallucinations, or his impaired mental capacity because of his severe confusion. They only knew his medical chart. They didn’t know HIM! They spoke to him like he was retarded and hard of hearing because all he could do was whisper and mumble his confused needs. His mom, sister, and I felt a strong need to protect him and constantly explain why this very intelligent man was not making sense. The first night was a rough one as we settled into our new routine in Three West.
Each stage of Steve’s healing process was challenging. The nurses were constantly telling us that this is how a body heals; there would be ups and downs for the entire journey. The body doesn’t appear to progressively get better each day. Things will be looking better and then there will be a set back. The set back will be dealt with and things will begin to look better again. It’s an emotional and physical roller coaster ride. This is exactly how we experienced the third floor of the regular hospital wing.
Steve still couldn’t swallow well enough to drink or eat anything. The speech therapist was regularly checking his throat for signs of improvement. His thirst level was so extreme at this point that he was in agony. His body was getting enough fluids through the food tube in his stomach, but it was a psychological issue. When our throats feel dry, we want a drink. It’s that simple. Steve complained of a sore, dry throat constantly, so our constant goal was to get his throat strong enough to eat. He needed to eat so his muscles could get stronger, but his weak muscles were causing him to not eat. It was a catch 22. Always.
His speech therapist informed us that drinking any liquid would be the last thing he would be allowed to do. Food would be first before a drink because food is less likely to go down the wrong way and choke him. By now, his throat had strengthened just enough that he could have “thickened” water, a water that was thickened with xantham gum. He hated the thickened water, it was like eating awful tasting pudding, but he would have some now and then because his dry throat needed to be soothed. The thickened water began to give him severe stomach aches and diarrhea. To add to this misery, the chemotherapy he was still receiving made him nauseous.
He was also still having night time hallucinations. His head was becoming more clear during the day, but in a darkened room at night the monsters would return. Between his constant need for a drink, his upset stomach, constant diarrhea, and night hallucinations, we had our hands full trying to comfort a now fully awake man who was suffering with a body that still couldn’t move and felt sick most of the time.
We had a roll away bed moved into his new room so that his mom, sister, and I could rotate spending the night with him. Now that the nurses weren’t checking on him constantly, we needed to be there to attend to his needs or ring his buzzer for him if he needed a nurse for a medical issue.
As soon as we arrived in Three West, the physical therapists began to show up daily to get Steve up and move him around. It was essential to move his frozen body so his blood could circulate and he could begin to remember how to use his muscles. The water weight was also beginning to return and movement would help reduce the swelling.
As miserable as Steve felt, he usually wanted this movement and sporadic trips outside in the wheelchair to sit in the sun for a while. The chemo made his skin sun sensitive, so it was tricky trying to get him the right amount of sun to clear up his mental fog, but not too much to irritate his chemo sensitive skin. It was always about the delicate balance of things in this phase of healing. Not too much thickened water or his stomach would hurt, not too much sun for his sensitive skin, not too much physical therapy, but enough to help his body learn how to move again.
I had naively thought when Steve was in his first week in ICU that he would get well and would someday walk out of the hospital and go home. It wasn’t going to happen that way. I was now beginning to grasp the very long road we had in front of us. I was told in the beginning it was going to be a long road, but I couldn’t fathom the extent of that, not when he was so critical, and not now as we sat daily with him on the third floor. The last floor before we would go home. Home……what would we do when we got home and he still couldn’t sit up on his own or he had a pain in the middle of the night that I couldn’t fix. What then? How was I going to manage our new life with a husband whose body needed constant care? And, would he always need constant care? A beautiful woman was about to walk into my life to answer that question.