I met our move from ICU with sort of mixed feelings. We were leaving the comfort of constant nursing and monitoring but we seemed to have finally taken the first steps to going home and getting a glimpse of our future.
We moved to a regular room when Marty got out of "minor" surgery, putting a shunt in her skull to her stomach to drain excess cerebral spinal fluid. This was a huge step, getting off a Ventrix which drains the CSF via gravity.
Marty was just starting to gain awareness of her surroundings but she looked awful. She had a semi-circular scar on her left front forehead. Actually, she had no left front forehead, she had no bone there, instead there was the scar and depression in her head about four inches across. Her hair had been partially shaved; it was matted with blood and sweat from the weeks lying on her back. She had a tracheotomy in her throat and a feeding tube in her stomach and she had lost probably 30 pounds. She was a mess and I was in our room with her alone and suddenly very aware how inadequate I was and how completely unprepared I was to make this next step.
The first day progressed nicely. Some time during that first night I heard Marty trying really hard to breathe she was gasping for air. I looked over and she was clearly struggling to get a breath and slowly turning very, very pale, she was turning blue, clearly struggling. I pushed the emergency button, told the person who answered Marty was suffocating and the nurses came running. A respiratory tech came in quickly and cleared out her trache, which had become clogged with gunk from her lungs. Once clean and clear Marty began to get air into her lungs again and color quickly returned to her face. I can't say the same about my face; needless to say I didn't sleep that night, at all. The next day they moved us closer to the nurse's station and attached an oxometer to her finger to constantly monitor her oxygen levels.
It didn't take long before Marty began to exert her true self in the room. Her recovery was actually quite remarkable. She had been near death, I mean really near death; it wasn't play like, it wasn't a dream, she almost died and now here she was refusing to leave the oxygen monitor on, taking off her oxygen and pulling and yanking on every tube inserted or attached to her. The more aware she became, the more obstinate she became.
To say I was tired doesn't really describe the feeling. I've worked hard in my life. I've worked long hours, through nights and days. I've never felt as tired. I struggled to stay awake in the day and couldn't sleep at night. I was blessed to have kids who were brave enough to stay with their Mother at night or parents who would stay with their daughter-in-law during the day. Matt and Sarah would stay, Erin would stay, and I would go to Matt and Sarah's house to sleep.
After three or four days of this routine the Doctors and Therapists began to talk about moving to the next step, comprehensive rehabilitation. No, of course, I knew nothing about any of that, but hospitals have social workers and they apparently know about everything. We started talking to Comp Rehab at Hillcrest in Waco. To qualify Marty would have to be able to work, do therapy, three hours a day. It seemed an impossible task. A really nice lady called to talk to me about the requirements and said they would need to assess Marty to see if she qualified. Not knowing how all of this worked and being the controlling type my first response was, “Well I don’t know if we want to use you guys anyway”; to quote Bugs Bunny, “What a maroon”.
Marty started sitting up in a wheel chair at Zale Lipshy. The first physical therapist we met put a gait belt on her, a belt you put around the waist to help control the patient, and got her up and moved her into the chair. I had never seen this kind of action before and it scared the hell out of me. Marty hadn't been up at all and all of the sudden this little bitty thing of a therapist was pulling and tugging and swinging on Marty and had her in a chair. Marty sat up about an hour the first time. It felt like a miracle and another huge step. It was the first time Marty had been up in about six weeks.
The second time she got up we cut her hair off. Her hair was a disaster. When they did the original surgery they had only shaved a portion of her head. (Note: if you or any of your loved ones is about to have brain surgery shave the head if you can) Her remaining hair was filthy and matted with blood and goo from the surgery. When she got up in her chair Erin found a pair of scissors and began working on her head. I know it must have killed her soul just a bit to do this to her Mother. The hair at the back just came out in clumps. Within about an hour Marty at least looked cleaner. Greater love hath no daughter than buzzing her Momma's head.
Funny thing about being in a hospital, you wait and wait to leave, are often disappointed because you can't, then all of the sudden everything falls into place and the next thing you know you are running to catch the ambulance carting your wife to Waco. I didn't catch up but Sue and Gail met Marty at Hillcrest. It’s a blessing to have friends. It was the start of rehab and once again I got to see just how little I knew about any of this stuff; that’s okay because knowing is often very frightening.