Update #16 – So much to do…
First an update on Honza’s medical condition. We had a scare last week during his first week at Santa Clara. Katka called down to get a status update and was told by the nurse that Honza had developed another “bed sore”. Oh No! Not that again. We were appalled… and scared. Turns out it was nothing like the last time. The sores have a standard progression. The first sign is a reddened area which if it goes undetected quickly ruptures and ulcerates, which is what happened at Memorial. In this case the nurses at Santa Clara immediately noticed the sore, started treatment, ordered a new bed and confined him to it for 3 days. The sore didn’t progress and his skin quickly returned to normal. We all breathed a huge sigh of relief!
Now, he can restart the process of getting acclimated to the wheelchair again. As soon as he can be the chair for 3 consecutive hours with no ill effects, he will be transferred to the rehabilitation unit to begin his rehab in earnest.
In other news the doctors at Santa Clara think Honza’s lung function is strong enough now that they can remove his tracheostomy. This is great news. He can breathe and talk like normal! No more breathing through a tube stuck in a hole in his throat. The plan is to wean him off the trach over a period of week or so and then remove it. The doctors at Santa Clara also think they have a handle on what’s been causing difficulties with Honza’s bladder and catheter. It’s not uncommon for people in Honza’s condition to have calcium leach out of the bones and enter the blood and urine. This is what was causing the stones and sediment in his urine and clogging his catheter. They think it can be controlled with medication and by closely managing his hydration.
Team meeting
Last Friday, we had our first “team meeting” with the staff at Santa Clara Valley Rehab Center. It was impressive. Katka, Stephen, Honza, two doctors (both the attending physician and resident), his occupational therapist, psychologist, case manager and a nurse or two were all crammed into his hospital room. Each person talked about their specific treatment for Honza. The short term goal was to get his medical condition stable and up to Santa Clara’s standards so he could be transferred from the trauma unit to the rehab unit. Then they outlined the program goals and timeline for his rehabilitation.
One huge difference from Memorial is that the meeting was held in Honza’s room and he was a full participant in the meeting. Each staff member addressed his or her comments to Honza and checked with Honza to see if he understood, had questions, and agreed with the plan. It’s clear that Santa Clara is much attuned to the key role the patient has to play in their own recovery and rehabilitation. It was good to see.
After that, there was a lot of discussion about what happens after Honza completes rehab and is ready to come home. That part of the meeting was daunting to say the least. It was the first time we really had to come to grips with the enormity of the task ahead. We left thinking… and have been thinking all week. Oh my god! How are we going to do all of this? Where are we going to find the time, and the money, and the people? Santa Clara will help and they will hook us up with local resources but still it all looks so intimidating and scary.
The staff talked about making the house handicapped accessible, transportation (they strongly recommended acquiring a wheelchair accessible vehicle) and the amount of care Honza is going to need. Basically, barring a dramatic change in his physical condition, he is going to require 24/7 attendance and care. We are going to have to undergo extensive training ourselves in how to care for him. But even if we wanted to, we couldn’t do it all ourselves. We are going to have to find, interview, screen and hire “personal care assistants” to be with him and care for him so we can continue to work and his brother Vojta can continue his college education. And what happens when we want to have a night out or go on vacation? We simply don’t know yet. We do know that we will continue to have the help and support of many in the community and of our friends and family and somehow or another we will figure it out.
- Honza, Vojta, Katka, Stephen
P.S. Visiting Honza
Santa Clara provides very reasonable accommodations for family and friends of patients who want to stay overnight or through the weekend. There are four one BR suites with full kitchen, bath , TV and DVD player within easy walking distance of the hospital. Each suite has a pull out convertible couch in the living room, so they can sleep up to four. We stayed in one last weekend. Nothing fancy, but they are relatively new, clean and nice. The only downside is there is construction going on close by, but that’s not much of a problem on the weekends. In any case, you can’t beat the price of $30 per night. Reservations required on a first come-first served basis. Call 1-408-885-7995.
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