As of March 29, 1999 update

Well I am sitting here waiting for a call back from the equipment people to verify that they will be able to provide the stuff that Suze needs for her transfer home so I thought I would give you all an update. The most important thing is that Suze will be coming home on Wednesday (3/31). She would appreciate visitors but please call ahead.

Suze came home on Friday and stayed overnight for a test visit to make sure that everything was in place and that we could function together by ourselves. Her OT therapist (Val) came down with us to give us some pointers on how to overcome the inherent problems with the house architecture. I had spent the previous couple of nights rearranging the furniture to provide a pathway from the front door to the kitchen/family room and into the downstairs bedroom. So everything is sort of stacked along one wall; prob going to rent a storage location and move the dining room set and some of the living room set into storage to give more room.

The Friday overnighter went pretty well with only the expected major glitches, mostly having to do with the small entrance way into the bathroom and the tight quarters there, nothing that can't be overcome just a real hassle. To make things easy I will be installing grab rails along most of the walls from the bedroom to the bathroom.

For the last week she has been eating pudding during her speech therapy to prep her for the modified barium swallow test which they did on Monday. She was up to 12 full spoonfuls of pudding at one time. She did well on the modified with the pudding and the honey-consistency but started to aspirate some of the nectar-consistency fluid so they stopped the test there. But for a first time it was excellent. What this means is that starting today (3/30) she will be making the transition to solid (pudding like) food. She can have whatever she wants as long as it can be run through the blender and pureed. She was supposed to have breakfast this morning, which I had wanted to see but am stuck here. I will have to do a calorie count and supplement her diet with tube feedings as necessary in addition to keeping her hydrated but this is a big step for her and should go a long way to improving her morale.

They have been weaning her off all the drugs slowly so as to be on minimal chemical therapy when she goes home and that has been pretty successful.

I am taking the rest of this week and all of next week off to support her transition home. That was part of the deal to get her into the day rehab program since they are concerned about her recent problem and how it could affect her ability to function at their facility. Still trying to work out the logistics with her day rehab, work and home. The day rehab isn't exactly how it was presented and maybe a real time problem. They want to do her therapies back to back over a three hour period and she may not be up to that, in addition it had been originally presented that she would be there longer than 3 hours/day (approx. 6 hrs), with rest breaks and cognitive life-skills to make up the rest of the time. This would have allowed me an easy opportunity to put my work time in during her therapy time. Now I will be looking at having to hire a home-health care provider (non insurance covered benefit) to watch her while I am at work. Hoping to find someone who can sit with her at night, her medical needs are pretty much non-existent at that point and I don't have to worry that she isn't getting proper care and therapy if it was at other times. It has some advantages and some disadvantages. Maybe I can get posted to the DOD's anti-cyberterrorism team an telecommute from home. So if you are in the Tidewater area and can provide some feedback on an agency to go or not to go to please let me know. This has sort of blindsided me and I am scrambling to get it into place.

Her walking is still be held back by her balance problems so she will be in a wheelchair for the foreseeable future. Still very tender on the right arm and her doctor mentioned "Complex Pain Syndrome" so that is something I am researching to find out what and how it can be treated. But she is allowing it to be manipulated somewhat; make a new splint for her which was a bit of an ordeal. I saw about 30 places where the process could have been streamlined and made a lot safer for both the patient and the tech, got to stop NRRO'ing everything. Had to bite my tongue a couple of times. She even choose to work on her arm when given a choice about what therapy to do, which is a first time she has chosen to do something that is obviously so painful.

Speech is coming along slowly, been concentrating on the swallowing portion as a higher priority. She can say about 15 words with moderate success, I can understand more than that but that is because I listen closely and if I don't she spells it out right away to train my ear, sort of like voice recognition on a computer only I am definitely not that smart.

Went shopping last night for a new computer desk for her that she can use with her w-chair and for some type of device that will allow her to signal me that she needs me if I am in another part of the house. Just a noise maker that is loud enough to be heard in through the house but won't bring the neighbours running. No luck on either score. Will probably be shifting the computer network to downstairs, going to stop by Aaron's Office rental to see if they rent office cubicle set-ups and just move everything out of the dining room and make it into the office/computer room. Either that or run ether from the upstairs downstairs and then back upstairs. Her computer acts as the internet gateway and I just don't feel like mussing with it at this point. Heck I still haven't finished the work on mine that I was in the process of doing just before the accident.

She has shown some improvement since the 'problem', they moved her to a different room, put her on the no visitors list w/o my escort, locked down all info about her and are using an alias at the front desk so for all intents and purposes she isn't there, most of those measures where at her request and the others were to limit the liability of the hospital. She is still fearful but has done better at her therapies but then again I have made a point to try to be there from 900 am on and do the hands-on portion of the therapy to reduce her stress. Hopefully once she gets home she will do better.

Last couple of days have been particularly difficult for me, I suffered a relapse last Wednesday from EBV and have been feeling 'rode hard and put away wet' every since. My internist was pretty sure that it was just a matter of time but I was sure that I could hold out until I could get her home and things would be a little less stressful both time wise and otherwise so I guess we were both right.

Well got to go and track down the equipment and try to get by the DMV to pick up the handicapped plates for the Volvo.

take care

lawrence