Concussion, Progression, Hospice

From James:

Short Version: So Young had a concussion a week ago but is fine. Her impairments continue to progress in the same gradual way, to the point that she is essentially housebound (and in her bed) most of the time. Hospice has started coming to the house to help.

Long Version:

Last Friday, November 2, So Young fell while getting out of the car and hit the back of her head on the pavement. Her eyes rolled back, and her speech was noticeably altered, so she was quickly taken to the ER. The CT scan revealed no bleeding on the brain, but she did have a concussion and a hematoma. (A hematoma is kind of like a bruise.) It isn’t entirely surprising that this happened, because she falls frequently  — probably over a dozen times during the last two months — but usually harmlessly and always inside the house. It’s almost impossible to completely prevent her from falling. I’m disappointed that I didn’t foresee this happening outside the house early enough to prevent it.

The fall, combined with the continued progression in symptoms, convinces me that I need to be more selective about taking her out of the house. Before the fall, she wanted to go out every day, and as much as her friends were uncomfortable doing so, they still did it because they love her. Now I have to be there to take her out, and even then it is a struggle for her.

Her mobility is increasingly diminished. When Dad and I helped her into the house recently, her struggle to walk was extreme. She could barely make it from the car, to the front door, and to the couch on the main level. I led her from the front, holding onto her arms like I always do. Dad walked behind and moved her right leg forward for her with each step. I later realized that I had to use the wheelchair just to get her to the bathroom from the couch, a few feet away. At the end of the evening, going up the stairs to the bed was a great exertion for her. I felt so bad making her climb those stairs.

Mom and I experienced something similar as I took her to a follow-up appointment this Monday. I learned that 15 minutes is not long enough to get her out the door! (I also forgot the wheelchair and parking pass at home… Not my finest hour.)

Dad and our friend David are working together to plan and build a wheelchair ramp to make it easier for So Young to get to the car. We are also investigating a stair chair she can sit on that would take her to the top level automatically. The hospice people suggested that we might consider putting her bed on the main level instead of getting the stair chair, but I don’t know if we’re ready for that yet.

So Young is still sleeping most of the day. Cognitively, I am convinced that she is diminished. Yesterday, Shannon reminded her that today is Shannon’s birthday. So Young asked her how old she is turning. So Young guessed 11. No. 12? No. Shannon is turning 14. So Young also gets words wrong and doesn’t track events well in the short-term. A syringe, for example, is inevitably a “popsicle stick.” You see her eyes searching  and she points her left finger around, as if searching for the right word or memory.

She can’t take care of most of her own needs without assistance. She can’t walk on her own, obviously, but also she can’t dress or bathe herself.

Meanwhile, Mom and I have both noticed how sweet and kind So Young is through all of this. Many people become angry or depressed when they are this ill. So Young is an exception so far. When I help her back to the bed from the bathroom, for example, she always says, “Thank you, Daddy,” to me. (She doesn’t think I’m her dad, by the way. Parents reading this know that you often end up calling each other “Mom” and “Dad,” as strange as that may seem.) A couple of times she has told me in a very heartfelt way that she is thankful that I am taking care of her. I could tell she was crying, but the tears don’t come anymore because of the tumor.

When we visited Dr. Holdhoff a few weeks ago, he suggested that we get hospice involved. Capital Caring started coming to our house on Wednesday. We’ve met the nurse and social worker so far. A doctor, nurse’s aides, and a chaplain are also part of the team. They will be monitoring So Young’s health and making sure she is comfortable. They also help with the family’s practical, emotional, and spiritual needs during this time.

We’ll be visiting Johns Hopkins this coming Tuesday, November 13, to get a follow-up MRI and appointment. If the chemo hasn’t been working, we will likely pursue some other course of treatment, such as a different kind of chemotherapy or more radiation. Dr. Holdhoff has mentioned Avastin as a possibility.

At her primary care doctor’s suggestion, I am looking into taking more time off during the next couple of months to spend more time with her and to have more family time in general. “This is your wife,” he said.

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14 Responses

  1. My heart goes out to you, the girls and So Young. I wish there was something I could do for you besides pray. I wish all of you strength. If there is anything I can do for you, please let me know.

  2. James, you and your family are so loved. We pray for you always.

  3. I will be down in a heartbeat. Say the word.

  4. Very tough to read. Much harder to write, I’m sure. Know that all of us are thinking of, and saying prayers for, all of you.

  5. It is difficult to read this, it is true, but one is left with the feeling of so very much love, both expressed and just from reading between the lines. It is like the light of God is shining upon your family and friends. May He grace So Young with his gift of healing. Prayers for you all.

  6. James, my heart aches for you and your family. I will continue to pray for So Young’s recovery.

  7. What a loving family you are… Such an example to show all of us how real christian families practice God’s love. We are praying with confidence that SoYoung will be healthy!

    Love, Grace and Grant

  8. Our great God of love and mercy is not unaware. I pray that He will move upon the hearts of those who know and love you to do whatever you and your family members need.
    …with love and prayers!
    Barbara Walvius

  9. My heart is just breaking for So Young and your family.
    You are often in our thoughts and prayers. I’ll keep checking for updates. Your blog clearly shows the hope of Christ that transcends our human condition – love to all of you. Debbie Barfoot

  10. Praying for you and your family James. Praying for a miracle.

  11. Praying for all of you and constantly for So Young to be healed. Thank you so much for the blog. Praying for you to have strength and peace from God. Marilyn

  12. PS, if it’s any consolation, tell Ruby that “popsicle stick” makes total sense to me. It’s a short jump from popsicle stick to tongue depressor, and then to syringe. Keep strong, keep the faith. I will keep you all. Also, check Twitter for my DM to you, James.

    xo

  13. You are all in my heart each and every moment.
    Debby

  14. Praying for your appointment and the MRI tomorrow. Marilyn

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