We were filled with hope when it was time for Allie to be discharged. We had all the doctors, pharmacists, therapists, hospitals, and emergency services in Eureka that we needed. The day I walked into the hospital to find Allie surrounded by machines and heating lamps seemed like it was in the distant past. There were two huge obstacles we faced during the weeks we lived in the hospital: the first, we didn’t know Allie would ever be well enough to leave the hospital, and, two, we didn’t think the courts would release her into our care. Overcoming those two obstacles dominated our time and energy. We just wanted to get out of the hospital and get on with our lives. Getting on with our lives turned out to be a third obstacle; the biggest obstacle of all.
I pulled my little Pontiac Vibe up to the doors of the hospital where Susan was waiting with Allie in her arms. I was excited to start this family road trip. Susan strapped Allie into her car seat. Allie started crying immediately. It must have been very confusing for her to go from Susan’s arms where she had been for eight weeks into this rigid little plastic device with thin padding and nylon straps. Allie was not as happy about this adventure as I was.
I pulled into a gas station three blocks from the hospital to fuel up for the trip. Allie’s cries of protest had morphed into howls. It got so bad that it drew the attention of other patrons while I fueled up the car. A wave of nausea came over me. I wanted to dash back to the hospital.
We were safe in the hospital. There was around the clock help. Allie was taking nourishment and medication through a g-tube by machines that were monitored by nurses who gave us food and meds on a schedule. When Allie cried, we could crawl into a bed with her and hold her while food was delivered to us from the cafeteria. Susan and I were allowed to stay in a room together with Allie in the hospital while nurses kept noises and disturbances away from us. Therapists came to visit Allie and to give her exercise. Doctors and administrators stopped by regularly and told us what fantastic grandparents we were for taking such great care of Allie while she was in the hospital. It was an oasis.
This trip would baptize us into our next new reality.
I finished fueling up the car and looked at Allie as she howled and then I looked at Susan who was already exasperated, and we were only three blocks from the hospital. We turned onto Highway One toward the Golden Gate Bridge. Allie cried all the way across this world famous structure, and, we realized, she pooped. She was terrified, and her bowels let go. The highway where the Golden Gate Bridge ended and freeway started was undergoing a massive reconstruction makeover. The roads were grooved, uneven, and hemmed in by huge cement barriers. Freeway exits were confusing. Allie was crying so loud I couldn’t focus on finding an exit.
“You just missed the exit,” Susan said.
“I didn’t see anything! What are you talking about?” I snapped back. We needed to get to a gas station or parking lot; anyplace would work so we could change Allie and maybe get her to stop crying.
We were fifteen minutes away from the hospital and Susan and I were more exasperated and frustrated than we had ever been on any trip in our 21 years of marriage.
I found an exit and pulled into the shopping center parking lot. We folded down a car seat to give Susan a flat surface to change Allie. The hard small space in the bright sunlight in the car was nothing like the soft bed in a gently lit hospital room Allie was used to. This was the worst, most uncomfortable place Allie has ever had her diaper changed. Because of her brain injury, every part of this experience for the last fifteen minutes was sheer terror for her. The car seat, the movements of the car through city streets, the folded seat as a changing table, the sounds of traffic and a freeway under construction, were all stimuli her brain, in its newly healing state, had never had to process. Rides in the car, being outdoors, sunlight, wind on her face, the busy noisiness of life were all alien experiences for her. She only knew life in the hospital.
It took us another fifteen minutes to get back on the road. We still had five and a half hours of driving ahead of us.
The drive through Sonoma, Mendocino, and Humboldt counties in Northern California is famous for some of the most beautiful scenery California has to offer. We were so involved with Allie we didn’t notice and didn’t care. The freeway ended not too many miles north of San Francisco and became a hilly, winding road through vineyards and fern-covered Redwood forests. For Susan and Allie, it was a motion sickness nightmare.
The highway started to widen and straighten out around Garberville in southern Humboldt County, about an hour south of our final destination in Eureka. Allie quieted down a little when the roads straightened out. It was time to feed and give Allie some medicine through her g-tube. In the hospital, this was done with a small machine that gently pushed food and meds into her stomach. In the car, we had to attach a wide plastic tube that fit into the g-tube receptacle in her abdomen wall, pour formula and meds into it, and hold it straight up using gravity to start the flow of the tube’s contents into her stomach. Allie began to cry more forcefully spraying the food and medicine mixture back through the tube onto Susan’s clothes. It should have taken about five minutes to get the few ounces of formula and few CCs of medicine into her belly. But every time it went in, her cries pushed it back out into the tube along with the other contents of her stomach. Despite her frustration, clever Susan figured out the rhythms of her cries and closed off the tube when most of its contents had flowed into Allie preventing them from flowing back out. This took forty-five minutes to accomplish.
Only an hour more of driving and we’d be at our new home.
We pulled up to the curb in front of my sister’s house in Eureka, exhausted. We wanted to get Allie fed again using the machine the hospital had arranged to be delivered and into bed as soon as we could.
When we got into the house, we found the second-hand crib someone donated was in pieces. This shouldn’t be a problem. If I had instructions and all the pieces, I could assemble anything. The used crib was about 30 years old so there were no instructions, and, it turns out, was missing many necessary pieces. Before Allie could go to bed, I would have to buy a crib and put it together.
It was also getting close to food and medicine time for Allie. A local medical supply company had dropped off the pump for Allie’s g-tube, so I held her while Susan set up the machine.
Susan informed me that we have a different feeding machine than the one she used in the hospital. She isn’t trained to use this one. She has no idea how it works. Allie is crying because she’s hungry, and we’re avoiding at all costs feeding her using the gravity method we used in the car, which, as the reader will remember, was a nightmare. So our options are to wait to get a new machine from a local pharmacy, or try to gravity feed Allie.
Our “to do” list was growing by the moment. We have to feed Allie, get a new machine, buy a crib, build a crib, and then put Allie to bed. Additionally, Susan and I hadn’t eaten since we were in the hospital in San Francisco that morning. How long is this day going to last? We had it made in the hospital.
One by one, each problem resolved itself. With just a phone call to the pharmacy, we were able to get a technician to come by to train Susan to use this different style of feeding machine. Allie was fed and given her doses of meds. That took less than an hour.
That handled, I drove around the corner to get some Mexican food. Meals are a juggling act because one of us holds Allie, the other eats, then we switch.
Now that we’d eaten, Allie was back in Susan’s arms, and I was off to Target to get a crib. Thankfully, the crib came with necessary tools to get the job done and easy to assemble. Buying the crib and putting it together, and putting sheets on the mattress took about an hour and a half.
This would be the first time Allie slept by herself. In the hospital, she slept in bed with Susan. That night we learned that to put her to sleep, we’d have to play lullaby music while rocking and bouncing her on the bed for about 45 minutes. Once she fell asleep, we’d have to gently move her into the crib without waking her. She had sixteen inches of tubing hanging from the g-tube in her abdomen, so this would be a delicate task since the tubing was always in the way. We accomplished getting settled and asleep in her new crib.
That was the first day of our new life and it was the longest day of our lives.
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