Walking again

During therapy yesterday Susan walked for the first time in about two months, using a walker to amble out of the therapy room, across the lobby and back. Her parents were there to share the joy. We're thankful she’s been making great progress physically and has continued to become more aware and alert. One of her therapists noted how much she’s been talking and described her speech as “word salad,” which is fitting since she easily combines images from her sensory menu into an idea she’s trying to express. She’ll probably benefit from some more speech therapy to help her thoughts become more grounded; but at least she’s talking and interacting.

The other afternoon Austin asked his mom if she was having a good day. Ever the sarcastic quipster, she said, “Oh yes, this morning I looked at the calendar and jumped for joy.”

Rehab therapy, more chemo – a good week

Susan completed her first full week at Broadway by the Sea and is receiving excellent care. The nurses and assistants provide compassionate help and attend well to Susan’s needs for medication, hygiene, and comfort. She has mild back pain most of the time, but she tolerates it well. I visit her once or twice a day and happened to be there earlier this week when she was having a physical therapy session. She used the automatic exercise bike that works legs and arms at a programmed speed and records the patient’s own exertion separately for left and right sides. It’s a useful tool for muscle strengthening and allowing therapists to track her progress. They also applied electrical stimulation to her arms and legs to help build muscle fiber. I watched as the team helped Susan stand from her wheelchair and transfer her weight from side to side while holding parallel bars, then sit down slowly. She still needs “max assist” right now, but has already made progress from last week.
We made a jail break yesterday for our first field trip to UCLA for chemotherapy. She tolerated the long ride well; and the chemo session went smoothly. We’re thankful for no apparent tumor growth from June to July – she’ll have her next MRI in four weeks. It was wonderful to spend a whole day together.

I’ve begun to learn what loneliness feels like since Susan has been at the rehab hospital (and will be for weeks) and I’m spending more time at home and at work again. It’s not that I’m alone – I’m just lonely for her. My longing for Susan feels like there’s a torrent of water rushing through me, through my heart, and I’m being emptied but not filled up again. Yet the peace of God is a great comfort, as is seeing her each day.
Overall, I’m thankful for how things are working out, how God has provided. Her spinal fracture could have been much worse; and I believe she’ll heal quickly. The event of her fall actually brought about the transition from UCLA to rehab, something Susan needed even before she fell. The good thing now is she’s getting relief from the muscle decline brought on by hydrocephalus and decadron, while she’s mentally able now to participate in therapy and get stronger. Susan feels lonely too, but she’s doing well overall. In another sign of God’s provision, I recall Susan telling me that when she was a girl she enjoyed being by herself in her room or in the bath, listening to music on the radio. As I left her alone in her room with radio music on earlier this week, she was content. I realized how well God has prepared her to handle this season.

Susan is still funny. I read her the next day’s menu and asked her if she likes the food. (Keep in mind this is hospital chow, institutional style. I think it’s just tolerable and I’m glad I don’t have to eat it. Also note that she’s stuck in bed and couldn’t walk away if her life depended on it.) She said she likes the food, and “it’s one more reason to keep coming back every day.”
Another time I was talking with Susan by her bedside when a nurse charged in for a second, one of dozens of daily interruptions when one of the staff comes in and needs to do something. As we turned toward her, the nurse said, “Oh, I’m just checking on you, I’m doing rounds,” and left. Susan sort of rolled her eyes and scoffed, “At least she’s not doing squares.”

Skilled nursing and rehab, finally

After a spate of false starts, Susan finally was transferred to a skilled nursing and rehab hospital late yesterday. It’s called Broadway by the Sea, located at 2725 E Broadway in Long Beach (between Redondo and Cherry). Susan is in Room 33. The five or so other hospitals we tried were at capacity for patients with acute needs, had no available bed, lacked a contract with our health insurance company, or had an undesirable reputation. With several additional days at UCLA to work the process, accomplishing the next step is a huge relief. We are most eager for her to begin her therapy so she can gain strength and return home.

Yesterday was Susan’s birthday, an unusual one under the circumstances. She ended the day getting settled in her new location and being surrounded by family, cards and flowers. She even enjoyed a slice of fresh peach pie. Life is a gift.

A fall and a fracture

Following Wednesday’s chemotherapy treatment at UCLA, Susan took a hard fall in the bathroom at the oncology clinic. I had lifted her from her wheelchair and had her standing steadily while holding the grab bar when I turned a few steps away to throw something in the trash. I saw movement out of the corner of my eye and turned to see her falling backwards, landing hard on her bottom and knocking the back of her head on the wall just behind her. It was a moment of surreal, slow-motion helplessness for me and one of intense pain for her. She slumped to her right side and cried. The staff heard the impact from outside and came to help right away. While the nurses examined her, we thought it best to call paramedics out of concern for back or brain injury. The medics arrived within several minutes and did their best to move her onto a backboard and fit a neck brace without hurting her, but it was excruciating. Everything hurt.

She was transported around the block to the ER at Ronald Reagan UCLA Medical Center and admitted about 3pm for a CT scan and spinal x-rays. They gave her something really strong for pain that took away the “everything hurts” sensation and allowed Susan to rest a bit. Doctors said the CT scan showed no head trauma or bleeding and said the spinal x-rays were negative also, a great relief. When it became clear she couldn’t tolerate transferring or sitting for a car ride and that I might run into trouble attending her at home, she was admitted to the hospital around 2:30am for observation and pain management.

We learned over the next two days that Susan does have a compression fracture on L-1, her first lumbar vertebra. The orthopedic surgeon said it’s not severe (could have been worse); and ordered a spinal CT scan to check for bone fragments (there are none). She’ll need to wear a brace to restrict her movements when she’s not lying down. She also had a second spinal tap on Friday to drain fluid for hydrocephalus since she was going to need another one soon anyway, and began antibiotic treatment for a raging bladder infection we discovered prior to Wednesday’s chemotherapy. Too much fun for one girl.

After evaluating her condition with the medical team and physical therapists, we decided Susan needs to have rehabilitation in a skilled nursing facility before coming home. That’s a new area for me in decision-making, so our nurse-friend Brenda Carruth came through with some excellent referrals from the discharge planner at Long Beach Memorial. I checked them out on Saturday chose Alamitos Belmont Rehabilitation Hospital in Long Beach. Susan will be transferred there Monday for what may be a stay of several weeks to a month or more depending on her progress. They seem very focused on rehab, so I think it will be a good environment for her to heal and get stronger. Susan may lower average patient age by about 20 years when she arrives. They play bingo there.

When the medics were attending Susan in the bathroom on Wednesday, our oncology nurse Nikki told me pointedly her fall was not my fault. Her words lifted a burden from me. I thanked her. I had not caused her to fall, but I had not prevented it either. It happened so fast – and she fell hard, almost like someone pushed her. It was one of those “if only” moments you wish you could take back and do differently. Since Nikki is both observant and caring, she saw whatever expression I had on my face and took the burden from me. I decided to agree with her since beating myself up with guilt isn’t going to help anything. Susan has had a complicated illness, so we just have to deal with it. Once again, we have felt the vast support of our family, friends and church over these past days. We know God hears every prayer and will continue to meet every need. We always thank Him for his goodness and mercy.