Dear Friends and Family of Joy:
Since I've been remiss in posting updates and because I'd like to keep people updated more readily and without having to send out scores of emails around the globe, I thought I'd start up this blog for those of you who know and care about my beloved wife, Joy. I will do my best to post on a weekly basis or whenever something meaningful happens during Joy's recovery. It's been almost two months since I sent out an email to you all and I apologize for my inactivity, but since Joy has been home my responsibilities have multiplied and I've been busy. Our home is now a bustling hospital for one.
Joy's first full day home was the 1st of May. Since that time, she's had nursing care provided by four nurses who work two alternating ten-hour shifts a day from 8 am to 6 pm and from 8 pm to 6 am. The nurses are great ladies and give Joy constant care, which she needs and appreciates. She's still on a feeding tube, but is eating jello, soup, and applesauce at times. She is now able to pick up a small glass of water with her left hand, sip it, and put it down without spilling it. Her coordination is improving daily. One day I gave her a small glass of fresh-squeezed orange juice. She sipped it, smiled and said, "Niiiice."
About three weeks ago Crystal (her nurse) and I noticed that Joy was trying to lift herself up out of her wheel chair. So we helped her stand and then walked her a few steps to her bed. She was putting one foot in front of the other and actually walking, which was a great sign of progress considering that a mere 8 weeks before that time she could not even move her right leg or right arm. Now she's moving both regularly and we are able to walk her from room to room several times a day.
Yesterday she treated us to another wonderful surprise. She put both hands on the arms of her wheelchair as if they were parallel bars and after a few unsuccessful attempts, lifted herself up to a standing position. She did it again a half-hour later. She can now stand for several minutes with both hands gripping the railing I've installed along the dining room wall and she does it with no assistance. When we walk her with one person on each side, she does well, although she tends to list to the starboard side, which is her weaker side.
She is speaking more with a full-throated voice, but she speaks mostly in disconnected fragments, often phrases that have to do with her job. Occasionally she will respond appropriately to a question with a one word answer or a nod. For example, after she walks for a while and is tired, and I ask her if she wants to sit back down in her chair, she will say, "yeah."
Unfortunately, the insurance company (United Healthcare) did not approve payment for any in-home nursing care, so we are paying for all of this out of pocket. They've also denied coverage for an ambulance bill for $3600-- the cost of the trip from Loma Linda UMC to Scripps Green hospital. They claim it was "non-emergent." I will probably contest that decision since I moved her to save her life when it became clear the doctors at Loma Linda had given up on her and were no longer interested in treating her. United Healthcare also paid part of the bill for the ambulance ride from Scripps Green to Carmel Mountain Rehab, but we have been billed $1300 for our share of the cost. We are additionally being billed for our share of medical services she received at both hospitals. Arrrgh. If we can get through this year, we should be all right.
On a more positive note, Joy's strength is increasing daily and her physical therapist is thrilled with her progress. (The insurance company is paying for in-home therapy.) By the eager look on her face, you can tell Joy wants to get better and stronger. The condition of her brain will take longer to improve, so all we can do is get her as healthy and strong as we can and let nature take its course. The term "neurological plasticity" means that undamaged parts of the brain can sometimes assume the responsibilities and tasks performed by the damaged parts. I hope that will happen with Joy.
I greatly appreciate all the prayers, letters, cards, flowers, gifts, emails, phone calls and good thoughts that have come our way from all of you who know and love Joy. Please stay in touch and don't hesitate to call if you want to know the latest. At some point I will learn how to post photos on this site so that you can see how she looks. (When she's not tired, she looks lovely. Radiant even.) Yesterday I took a shot of her reading the Wall Street Journal. Of course, she wasn't actually reading it, but was instead fascinated by the pictures and complexity of the thing . That is how she is with a lot of objects. She stares at them endlessly and seems to absorb their essence.
I have my down periods when I wonder if Joy will ever recover to the level she would find acceptable, but her progress while at home has picked up my spirits some and I've become more hopeful. Most importantly, she is actively trying to get better and seems more aware of the process and her role in it.
Love and best wishes to you all,
Doug
