I know people are craving updates

I'm sorry I have gotten so behind on keeping up. If I get any further behind I'll be ahead.

Ok. Sara is medically doing very well. No infections, fevers, etc. Her spirits have been pretty up, as she is starting to look forward to coming home.

As you can see, that is the main goal. I've given the discharge planners everything they were asking for towards getting the plan in place to bring her home. It is still set for her to go to Kaiser Vallejo for family training, but when is another question.

I put a chart up on her wall last week with what has to happen for her to come home. There is a list of stuff for Sara to do, a list for the discharge planners, for the medical staff, and a list for Mom. I have done all but two items on my list, and they will be done tomorrow.

I'll write it down and post it up here, so you guys can watch the progress of her coming home, too.

Basically, we got to the six month point and I said "cluck it...we're done...let's get you home." They're not doing anything significant for her. We will.

Many people have been giving me the "you don't know what you're getting yourself into" talk and I understand they mean well. Nobody has offered me a viable alternative to it. Its not better for her to go to another nursing home. Rehab won't take her. Acute care is more than she needs. And living the rest of her life in a hospital bed is just not going to happen. She deserves better.

So, that is the plan, the goal, the focus. I just want her home. She just wants to be home. It'll be hard, but I can take that kind of hard. The driving, gas costs, and short time I get to see her is just too much. This way, no driving, no gas costs, more time with her. Win. Win. Win. She gets to be where she wants, with her animals and family, and encouraged and helped to go further. Win. Win. Win.

And, with her closer, other people will get an opportunity to help with her. Many people have volunteered and want to, but the hospital environment has been quite prohibitive.

Anyway, there is the current. I'm trying to get time to keep up. Had some nice big issues at work (database blowing up and launching some major projects), and the drive is really starting to wear on me. So, i've just been walking past my computer on my way to sleep lately.

My mother-out-law is about to get on a plane and come out and kick my ass if I don't keep the entries up. I'm with her on this one. I do like to share. Anybody want to donate a couple of extra hours in the day to me?

5/4/08

Sunday was a short visit this week. I had a speech I needed to write, and unfortunately I needed internet access, which the hospital lacks. However in that short amount of time I showed Sara a few things that some people at her online art community have been doing for her. They made her a short video, and one of the members actually sang a song for Sara. She loved them both. Afterwards, I set up "Robin Hood, Men in tights" and did as much on my speech as I could while she watched. After it was over, I told her I needed to get back home, made sure she was comfortable and turned on comedy central for her.

Medically she seems to be doing pretty well. She is apparently communicating with the nurses using her computer. Her nurse walked in shortly after I did, Sara was still smiling at me. The nurse looked at her, then me, then back at her and said something along the lines of: "Oh, I see. Is this him?" So apparently Sara has gotten to the point of being able to gossip about me using that computer. That's a good thing for her. Though I'm still not sure what that means for me...

~Daniel H.

Six months 7 days

She did the most amazing thing yesterday.

I mentioned before that she's been lifting her hands up off the bed (make fists, shakes a lot, but they get up off the bed and she is WORKING it.). Well, yesterday she held the sheets with her left hand and lifted up only her right arm, then (shakily) moved it until she could put her hand down on mine. We both cried. I remember the first time she reached out to me as a baby and took my hand, and this was even more meaningful. It is so different from picking up and holding her hand. To see her working so hard for something as sweet and simple as holding hands - and then to feel the warmth and weight of her hand touch mine - overwhelming.

We spent the rest of the evening watching TV and holding hands.

That's way better than stopping to smell the roses...

Sunday with more friends

This weekend, I was latte getting to visit Sara because for the first part of the day I was driving back up from LA. On the bright side, I brought with me three more of Sara's friends (Andy, Kim, and Tim) who were on the trip with me. This was the furthest I've been from Sara since she's been hospitalized. We were down there to visit another friend and to go to the Renaissance fair. Tim had brought his video camera, so while we were visiting Sara, we hooked up his camera to the TV in Sara's room and played back most of the footage that was taken. Once the footage was rolling, I Crawled up next to Sara and fell asleep. Everybody else seemed to find my sleeping amusing. or so they said when I woke up. It was a fun time, Sara was really glad to see some of her friends again.

Medicly, She is doing well. She had some dust or something similar in her eye, and that was bothering her. The nurse got her some eye drops, and that seemed to help. Other then that, everything seemed good. Although I noticed that the Nurses still aren't putting her heels flush up against the bottoms of her foot splints all the time. At least they weren't sliding out. Otherwise, whats the point?

~Daniel H.

Results of PT/OT evaluations for rehab and plan

I just got a call from the discharge planner. Well, the evaluations were done by PT and OT and they've recommended Sara for Vallejo only for family care training and then discharge to home. Again, they don't see her potential for recovery. It just makes me cave in inside. But, hell, we see it, Sara knows it, she just needs time. Time she has and at least at home she'll have safety, love and her family and friends there to surround her.

So, I have a meeting next Monday with the discharge group to plan the transition. Before I go i'll need the names of anyone else that would like to be trained as a family/emergency caregiver. We will supplement the nurses that will be paid by MediCAL. (btw - lobby your representatives NOT to cut MediCAL benefits! Kaiser does not pay for home care at all.) Family/emergency caregivers will have keys to my house and are welcome and encouraged to stop in anytime and check on her with the nurses. I will have to be working from home when she first comes home (and as much as they'll let me afterward), to oversee her nursing.

Also, it looks like its time to get her room ready. I'm going to throw this out there to her friends. She wants me to paint her room, and wants me to invite her friends to decorate it with her stuff for her. I'll take care of the painting and getting the shelves up. Daniel, if you could ask the Circle of Friends to decorate and manage that, it would be great.

I'll get her shower system ordered. Her Grandpa George sent some money for me to get something special for Sara. She LOVES showers and actually being clean. It is one of the biggest things she is looking forward to when she gets home - a real shower - actually feeling clean. I think that she'd enjoy that daily, and he'd enjoy knowing he made her day a little better each day.

Her friends from Tower of Time and Deviant Art have been sending in whatever they could for donations. What a great group of friends. I know she has really missed her online art community. I am setting aside their donations to see if there is some way we could get her drawing again (some interface or program that would allow her to do it somehow).

I am not sure what the status will be about her communication computer. Kaiser is renting it and somedays it works, some days it doesn't. It has the capability to allow her to quickly communicate (people dismiss her if it takes too long), go on the internet and browse, chat and even make phone calls. Problem is that without training (or it working steadily) it does none of that. I jumped up and down to the company and speech therapist until somebody committed to coming to fix it and see if a different sensor may be in order.

Oh, man...and I need to get the ramp designed and built. That won't be hard, actually. Luckily I'm pretty fair at swinging a hammer, but I may ask a contractor friend of mine to do it. Just thinking about all of this makes me want to crawl under my desk and take a nap.

Even as disappointed (and scared) I am that she's not going to Vallejo, I AM looking forward to having her home. Its been six months without her. I know we will all be happier once she's there. And then I can turn off the porch light...

(Porch Light - I have always left the porch light on if someone who lives here is not home - even when she would stay at daniels for the night - just something about the porch light always being on, ready for you to come home safe... So, it stays on, night and day, waiting for her to come home safe...)

late sunday update

Sunday was a fun day this week, mainly because our friend Phil joined me in my trip up to see Sara. This is the first time one of her friends has visited her since she was in Rossmore. She was really happy to see him. Unfortunately it was a bit much for Phil to handle at first. But he perked up once we started watching "Office Space". After that we were all laughing. Sara's Brother also got dropped off at the hospital that afternoon, so her room was rather crowded. We left a bit earlier then I normally do because I could tell that she was getting kinda tired from laughing so much. I also had to make sure I got Phil and Michael home at a reasonable hour.

I talked to her nurse today and found out that Sara's doctor this week had ordered some kind of Occupational therapy along with the Physical therapy. The nurse didn't know what kind though. Another good thing was Sara didn't need to be suctioned at all while we were there today. There were a couple times when she was sounding pretty clogged up, but when I asked her if she wanted to be suctioned, she always said no. She was able to take care of it on her own I guess.

Also, I would like to let Sara's online art community, Tower of Time, know that I read to her all the comments you posted. And she smiled at all of them. She was really happy to hear from you guys.

~Daniel H.

Volunteer Activity.

I was up to see Sara on Friday. Its good to see her out of ICU again. Less wires all over the place. This time around she has a room to her self in direct view of the nurses station. Although, from the desk, they can only see her feet.

One definite change I noticed was the extra attention coming Sara's way. I'm not talking about from the nurses though. There are several volunteers making rounds it seems. Three times, there was a knock on the door from these volunteers.

The 1st one asked if She wanted to watch any videos. They apparently have a small selection of them. I told them that I already had it covered, but thank you. As usual, I had brought my Xbox and we were getting ready to watch "Princess Mononoke". The woman thought that it was great that I went through the effort of bringing in movies, and setting them up for Sara though.

The second time One of them came, She was pushing around what appeared to be a converted laundry bin. I couldn't see inside, but she asked if Sara wanted anything. She listed a few things, "Books & Magazines" were a couple of them. She also said "We have teddy bears" I looked at Sara, and then at her stuffed penguin, sparky. I told the woman "I think we're ok. She actually has a stuffed penguin already" Her response was something along the lines of "Oh, you've already gotten one" So I'm slightly afraid that they'll think that Sparky is one of theirs, and take it back at some point. But I'm probably just being over protective of it because I was the one that gave it to her. The woman Said she would come by later.

The third time, we were actually visited by a pair of what appeared to be high school girls. Most likely doing Community service. The looked really surprised and confused when they opened the door. They probably weren't used to seeing visitors lying next to patients in the hospital beds. After a few moments of confused silence, I paused the movie and asked if i could help them. The poor girls seemed frightened almost. (I have always known that I scare small children, I didn't expect it to ever extend up to high school age though.) The were there to keep her company for a while. I told them that it was fine, but I was still going to be there for another few hours. They said they would come back later and promptly backed out of the room.

I think It's great that they Have volunteers doing this stuff. Unfortunately I feel kinda bad for unintentionally thwarting their efforts at kindness and community service by beating them too it in. I guess it just allows them to give that attention to other people in the hospital that don't get as much attention from friends and family as Sara does. I hope those people come around again in the earlier parts of the day when Sara doesn't have us around.

As far as Sara's status goes, She's doing well by what I could see. Her vitals were good, and she wasn't coughing much either. She moved Her arms while I was there again too. That's always good to see. She must have been pretty tired though. She was actually napping when I got there. So I just stayed quiet and hung up some strands of origami cranes that I made from the TV mount.

There are 200 in the room now, along with 100 more in the flower press under my bed. (The first strands I made with the wings folded out. But they stack better and take up less room if they are folded up. So I put them in a press to flatten them out again.) I made a bunch more yesterday too, so I'm basically 1/3 of the way to my goal (1,000)..... I'm making slow progress.... Things like School are taking a higher priority.

I also brought in some Poster board with signatures from a bunch of teams at the San Jose F.I.R.S.T. Robotics Competition. Sara and I were part of our high school robotics team. So the team this year had the other competitors sign posters for her. I think its really great.

~Daniel H.