Update #14: Honza finally gets to see the sun…
Late News Flash! Bye-bye Memorial…
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We have heard this so many times before we are in the mode of “I’ll believe it when I see it.”Nevertheless, he is scheduled to be transferred from Memorial to Santa Clara on Thursday, Sept. 24th. Katka will be going with him and staying at least overnight. We will write another update when she returns with her first impressions of Santa Clara. The rest of this update was written before we learned that his transfer was actually scheduled.
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Honza has been making great progress in being able to be taken out of bed and placed in a specialized wheelchair that can support him. He can sit in the chair for about 1 ½ hours now. It’s quite a project to get him out of bed. First they tried to use a kind of hydraulic lifting device, but strapping him in and lifting him that way was very painful for him. The hospital staff found it was much easier to just kind of lift him by hand and gently place him in the chair… but it takes 3 people to do it! We wonder how we will handle it when he gets home. But, what a great thing it is for him to finally be able to get out of bed. Yesterday, he was outside the hospital walls for the first time since he was admitted in mid-June! Breathing fresh air, feeling the sunshine on his cheeks. He wanted to see the REACH helicopter landing on the roof. We realized he had never seen the hospital from the outside and didn’t really know where he had been all this time.
The nurses and doctors check the wound before and after each session in the wheelchair. So far, it’s looking good and hasn’t caused any problems or showed any signs of re-opening. Santa Clara sent a nurse on Monday, to evaluate Honza for transfer to Santa Clara, and it looks good pending approval of some paperwork from California Children’s Services. We are anxiously awaiting that, because it was a paperwork hold-up that delayed his transfer months ago and the delay is what enabled the pressure wound to develop in the first place. Hopefully, it will be done quickly this time and he can be transferred early next week.
Thanks to a good cooperation between Honza’s Aunt Tereza (she is an M.D.) Stephen and Dr. Brian Schmidt (who is overseeing Honza’s care at Memorial) Honza has been prescribed a new medication, that should help reduce some of his nerve sensitivity, muscle spasticity and nausea while stimulating his appetite. He actually asked for some solid food the other night which is a great sign. We hope for more food requests like it used to be at home. “What’s for dinner?” “Can I eat this?” Do we have any more?”
I realize that there are still many people, even friends and acquaintances, I bump into around town, who have not heard what happened to our family. I wish there was a way I could somehow get out the word to everyone. Because the more people know and talk about it, the more likely it is that some helpful idea, person, or research will surface that will prove vital in Honza’s recovery. This has already happened several times and we are always open to anything that might help.
K V H and Stephen
April 16th, 2010 at 7:11 am
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