Update #17 Progress at Santa Clara, Preparations at Home
First off, we would like to apologize for the tardiness of this update to everyone who checks this site regularly to track Honza’s progress. The way it works is that Katka writes the updates, but since English is not her first language, Stephen edits for grammar and spelling and then publishes the updates on the site. Katka has been doing her job in writing regular updates, but Stephen wasn’t doing his, because it’s the fall harvest season and he has been very busy with the vineyard and winery. Harvest is now winding down, so he promises to get the updates out in a timelier fashion.
Honza’s Progress
Honza has been making substantial progress on many fronts while at Santa Clara. First some really good news: On Monday, Oct. 26th, Honza had his tracheostomy removed! He has recovered enough strength and capacity in his lungs so that he no longer needs it. He is also showing good appetite and eating well, although he definitely prefers home-cooked or take-out restaurant food to hospital food. Who doesn’t? The doctors have also removed his feeding tube and he is now eating, breathing and talking normally! These are all huge advances. He now spends hours talking on the phone with his friends and last week when we visited, he wolfed down two soft tacos from Baja Fresh. The improvements in his physical condition, regular counseling sessions with the staff psychologist at Santa Clara and weekly peer support group meetings with others who have suffered similar injuries have greatly improved Honza’s mental outlook.
However, developments on the mobility and movement side have been more spotty and challenging. It’s been a sort of “good vs. evil” battle. In this case, it’s the good muscles vs. the bad muscles. Honza has some strength and control in his right hand and fingers and his right biceps muscles. Those are the good guys. However, he also has what the doctors call “spasticity” in his right wrist tendons and the triceps muscle in his right arm. The spastic muscles are the bad guys because they can uncontrollably and forcibly contract, inhibiting his ability to control the good muscles.
The spasticity is more or less of an issue in his whole body. The spasms are also painful for Honza as they sometimes contort his body and limbs into uncomfortable and awkward positions. The challenge is to inhibit and weaken the “bad guys” so that Honza can strengthen and extend his control of the “good guys”. The doctors are trying several systemic drugs to control his whole body spasticity, and last week tried local injections of Botox to weaken the spastic muscles in his right arm, so that Honza can strengthen and gain more control over his right biceps and the fingers of his right hand. Doing so is of huge importance, because if he can reliably control his right hand, then he can manipulate a joystick controller on a motorized wheelchair. If he can do this, then he will be able to control his own mobility. He had some success last week in doing so, but he’s had some crashes too, when he can’t quite get his hand to do what he wants it to do because of the spasticity. He is like student driver, trying to learn to drive, while someone is uncontrollably jerking the wheel. He can’t dependably control the chair yet, but we are all hopeful he can get there with the proper medication and therapy. And his progress will largely determine how long he stays at Santa Clara. If he shows consistent improvement he will stay longer. If he is unable to progress then Santa Clara will declare his rehab has gone as far as it can and he will be discharged.
His other major physical therapy objective is keeping his joints and muscles from becoming stiff and inflexible. For this the nurses, strap Honza into a “spinning” machine which moves his arms and legs slowly in a kind of a half-jogging, half-riding a bicycle motion, stretching and relaxing his joints and muscles while hopefully stimulating his brain and spinal cord to remember, “Hey, I used to do this.” We have read that Christopher Reeve was a big believer in this type of therapy and believe it directly contributed to his regaining movement and control in his wrists some seven years after his accident.
The Home Front
We have started preparing the house for Honza to come home. He will need a special hospital bed and mattress to prevent pressure wounds and a hydraulic lift to get in and out of bed since he is too big and heavy to lift by hand. He will have a motorized wheelchair and we will build a ramp so he can wheel in and out of the house. Everything but the ramp will be paid for by CA Child Services. We will have to pay for the ramp since CCS and MediCal doesn’t pay for permanent home modifications. Those are the only immediate modifications needed for the house. Initially, his bathing and bodily function care will have to be done from his bed. Eventually the ideal situation would be for him to have a wheelchair accessible shower and commode. But that is not possible in Stephen’s little house, so we will make do for now.
So, the crucial necessities will be there, but there are many other things we’d like to have that he’s currently using at Santa Clara. Honza can talk on the phone with a headset but he can’t dial or answer it himself, so he needs a voice activated and controlled phone so he can make and answer calls. The rooms in Santa Clara are equipped with flat screen TVs that are mounted on arms that attach to the bed and have simple remotes that can be controlled with one finger. They also have voice-operated computers. We would like to provide Honza all of these things, so he can have as much control over his life and as stimulating an environment as possible. Any help would be appreciated.
We have also started investigating wheelchair accessible vehicles. The choices are pretty much limited to full size vans, mini-vans and recently, some specialty vehicles like the Honda Element. We aren’t sure whether it’s better and more cost effective to buy a suitable vehicle and have it modified to his needs or to buy a vehicle that has already been modified by one of the companies that specializes in these vehicles. One thing we have learned is that these vehicles are costly! So, if anyone has some leads or advice on obtaining one of these vehicles, please contact us.
Finally, we are actively searching for and interviewing for personal care assistants experienced in caring for someone in Honza’s condition. Katka and Stephen both work, so we need essentially full time help and are looking for one or more people who can provide the necessary coverage. If you know of a good reliable, responsible person who would be interested, please contact us. We are open to any age, race, gender, etc. but since his needs are so personal and intimate, it’s really going to be Honza’s choice based on who he is compatible and comfortable with.
Sorry, for the long post, but there was a lot to share. We will post more regularly in the future so that we can keep them more up to date and shorter.
- Katka, Vojta, Honza, Stephen
October 29th, 2009 at 4:26 pm
Honza and Katka, I just wanted to say that I am so proud of you and your family for taking on all of this difficulty and change with bravery and grace. I am thrilled to hear of the progress that Honza is making at Santa Clara, it sounds like they really have an amazing rehab program there. I have heard such before but to hear details is really astounding. Honza, I think of you often although you may not remember me…I am a nurse at Memorial who took care of you a few times. I am so proud of you for continuing to fight despite months of incredibly trying experiences. I hope that the times you have with others with similar difficulties will be very meaningful for you. Your smile always lit up the room, even though some days it was few and far between
Take care and know you are often in my thoughts and prayers.
November 4th, 2009 at 2:23 am
Hi guys, hope you are all doing well, I am very excited to hear of all the progress that Honza is making, I am also happy to hear that he has setlled well at the rehab facility and that it is to his liking. He must actually be getting better because i have attempted to call him on various occassions and he is always on the phone lol. All the same i wish you all well, it was a pleasure looking after you while you were here at Memorial Hospital. You are a good man Honza (despite being a Pitsburgh Steeler’s supporter) and I wish you well. Many challenges will continue to come but you have done very well my friend thus far, keep the faith.
November 9th, 2009 at 3:12 pm
Dear Honza, Katka, Vojta,Steven. I found an American side, which helps people, like Honza. This is the website:
http://www.unitedspinal.org/
I hope, you can read the site and found some good news for Honza. Send love
Barbara, Izabela’s mother from Poland.
Katka, please, write to me an e-mail.
December 28th, 2009 at 12:20 pm
Am unable to determine how to contact you so am using this method. Please contact me about a donation made to the Help Honza fund in June.
Very pleased to learn of Honza’s progress. Wishing you peace and strength.
July 15th, 2010 at 10:31 am
Buy:Valtrex.Prevacid.Nexium.Petcam (Metacam) Oral Suspension.Zovirax.Retin-A.100% Pure Okinawan Coral Calcium.Prednisolone.Synthroid.Mega Hoodia.Zyban.Actos.Human Growth Hormone.Arimidex.Lumigan.Accutane….
July 20th, 2010 at 11:16 am
Buy:Lumigan.Prednisolone.Actos.Petcam (Metacam) Oral Suspension.Nexium.Mega Hoodia.Retin-A.Zovirax.100% Pure Okinawan Coral Calcium.Valtrex.Synthroid.Zyban.Accutane.Human Growth Hormone.Arimidex.Prevacid….
August 29th, 2010 at 7:14 pm
battery http://fpvcdopbrak.AACEHARDWARE.INFO/tag/audi+a4+battery+Battery/ : battery…
a4…