2009 – A year that won’t be missed but won’t be soon forgotten

Today is the first Monday of 2010, a new year, and hopefully a much better one. For us, 2009 was like two different years. The first half was a time great anticipation. The boys were going to move out and live on their own. Katka and I had plans of our own … and then on June 13^th everything changed. On the day Honza was injured life as we knew it ended. It was sudden, shocking, and overwhelming. The time since then has flown by, but in a distorted, weird, stressful kind of way. Caring for a quadriplegic is 24×7 job. His needs trump every single aspect of life.  It’s a difficult thing to get used to. Along with Honza’s care, there is a never-ending stream of visitors coming and going, forms to fill out, appointments to schedule, phone calls to make or answer, research to do, programs and grants to apply for.  The days are so busy, so overwhelming, and yet so much the same that they seem to merge and sometimes we lose track of the time, the date, even the day of the week. Instead, we measure time in terms of when the next round of meds are due, when the therapists are going to arrive or when it is time to do Honza’s bowel program. It is a strange existence.

Hopefully, that will help explain why it has been so long since we have updated the website. Honza was released from the Santa Clara Valley Medical Center Rehabilitation unit on November 23, and came home to Stephen’s little house in Santa Rosa. Santa Clara did as well as they could to train us for what was to come, but in no way were we really prepared. Living with a quadriplegic (especially in a house that could best be described as “disability hostile”) is a challenge … to put it mildly.

Catching up

As I mentioned earlier, Honza came home just before Thanksgiving after spending 8 weeks in the spinal cord injury rehabilitation center at Santa Clara Valley Medical Center. I think a lot of people (us included) misunderstand the function of a rehabilitation facility. Their mission is NOT to medically improve the condition of their patients. Rather, the objective is the train the patients themselves and their caregivers (family, friends or professionals) HOW to function as well as possible with their disability.

For the first part of his stay at Santa Clara most of the focus was on Honza himself. Getting him medically stable, completely healing his pressure wound, weaning him from his trachea and his feeding tube, and getting him up and out of bed. And those efforts were quite successful. After a month at Santa Clara, Honza had his trachea and his feeding tubes removed and was eating and breathing normally. Then the focus shifted to trying various medications and therapies to maximize his functional movement so they could determine what kind of wheelchair and other equipment he would need. Honza made great progress during those weeks. He was with others who had suffered similar injuries and the staff at SCVMC were top notch.

We think Honza would have benefited greatly from spending more time at Santa Clara. In fact, we interviewed many former patients who stayed an average of 6 months or more, but sadly with current health care crisis in this country, the emphasis is on getting patients out of the hospital as quickly as possible.  Even in the short time he was there, Honza began to regain some movement and control in his right hand, almost enough to reliably operate a joystick on a powered wheelchair but he suffered from random spasms that would cause him to lose control. Even so, after four weeks, the focus shifted away from in-patient rehabilitation and therapy to preparing Honza (and us) for him to come home. And that proved to be a rocky road indeed.  Since his injury, Honza had been cared for by medical professionals. Now he was going to have to be dependent on his family and friends for his most intimate needs and care. He was humiliated and angry. He made it very hard on everyone and his release from Santa Clara was delayed several times because the staff felt he was not ready to be released. Finally, he was released on November 23.

The Home Front

Stephen’s house is really small and can best be described as “handicapped hostile”. The floor plan is relatively open but the doorways are small and Honza’s powered chair is large. It makes for some tight maneuvering.  Even with one bedroom completely devoted to Honza, there are medical supplies stuffed in just about every corner. The spare wheelchair sits in the kitchen. CA Children’s Services is paying for in-patient therapy from two wonderful therapists who come twice a week, but that will end in January. We are not sure what will happen next but we are determined that Honza get the best therapy as often as possible. We also are hoping he will find the motivation to go back to school. We have found two caregivers who each come three days a week but we are not sure how much longer we can pay for them unless we qualify for In Home Support Services from the state. Dr. Brian Schmidt who oversaw Honza’s care at Memorial has been a godsend. He has visited Honza several times and has basically taken on the role of his personal physician. We can’t thank him enough. And there is a constant stream of social workers, MediCAL case workers, alternative therapy practitioners, and equipment vendors and installers cycling through. Honza’s friends also come by often and that’s a good thing… but privacy and peace are distant memories.

The physical work of caring for Honza is hard. He is a big boy. Turning him, moving him from his bed to his chair and back again is hard on our middle-aged backs. But the mental and emotional toll is higher. Honza is struggling with accepting life as it is now. He has little control over his life which makes him fight for every bit he can. Since, he has so little that he can positively control, many of his attempts to control things are negative such as being uncooperative or unresponsive. From research and counseling sessions with mental health professionals we know that he is suffering from post traumatic stress and feeling grief over the terrible loss he has experienced.  We are seeing a very good psychologist who we believe is slowly gaining Honza’s trust, but on some days the stress and tension on top of his care giving is almost to much to bear.

What makes it bearable, are the many friends and members of the community who have stepped up to help. First among them is Honza’s girlfriend, Brianna Angell. Since the day he was injured Brianna has been a tower of strength and energy. She has been instrumental in his fundraisers. She comes to visit Honza almost every day. She has learned practically every aspect of his care giving. And she does it all with a smile and a positive attitude which is an inspiration to us all. What a girl!

And of course, such a great girl must have great parents. Brad and Karan Angell have been as supportive to Katka and Stephen as Brianna has been to Honza. They have also been very involved in the fundraising efforts and have opened up their house and heart to us.  So to have Grady and Jane Wann. Grady (Honza’s former golf coach) has been working with Stephen on the Honza Ripa Special Needs Trust and was kind enough to lend Katka one of their cars for two weeks when Katka’s car was totaled in an accident on 101 (not her fault and fortunately she was not injured). And both Grady and Jane are also learning how to be caregivers for Honza and show up once or twice every week to give Stephen and Katka a break. And last but not least, Katka’s sister, Dr. Tereza Hubkova, has been amazingly generous and supportive, having traveled here from Massachusetts a half-dozen times, paid for alternative therapies, researched new treatments and sent us tons of items to help in his recovery.

Hopes for 2010

We didn’t go out this New Year’s Eve. Didn’t feel much like celebrating.  And we are keeping our hopes modest for 2010. We hope Honza continues to make progress in his recovery. We hope we can raise enough money to pay for his daily care, buy a wheelchair accessible vehicle and maybe pay some promising new treatment or therapy. We hope that his mental and emotional state improves and that he can again find joy and a zest for life. And we hope that all of you who have somehow found the time and energy to help us, have a happy, healthy and secure 2010. Please, be good to yourself and to each other so that the world becomes a better place for all of us.

Katka, Stephen, Vojta, Honza

P.S. A personal note from Katka

If you will allow me, I want to express my deep appreciation to my partner, Stephen, who has stood by me and been as equally involved as I am. Every single day, dawn to dusk… trying to find help… looking for solutions… making tons of phone calls…going on car trips…having very little time for himself and his own family he deeply loves and misses. Thank you. There are not many people like you, Stephen. I love you very much. I was lucky to have met you, so were my boys.

Katka