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.

Back out of ICU, baby!

Sara has been transferred back upstairs to the Respiratory Care ward. She has done really well in ICU lately, and her oral secretions are down. Dr. ThisWeek called me a little while ago and we discussed the plan. That plan is for them to continue to wean her down (currently at 28% oxygen - to 21% oxygen) and then decanulate her. I told him that once she is decanulated then I want to bring her home.

He said he will have the discharge planners call me to get that process started. We did discuss her current participation level in therapy (doing well and she's loving it). I asked him if he could check with the PTs working with her on whether they feel she may NOW be a good candidate for Vallejo.

Who knows?... Either way, she's doing well and moving to a lower level of care, on her way slowly to home...

A sigh of relief..

I have FINALLY cleared the other apartment. I had to take two days off work to finish cleaning (and that included the weekend). In all it took 8 days to clean the place - 4 full, and 12 hours spread over 4 days. We turned over the condo with absolutely zero discrepancies. All repairs were done, walls that needed painted were painted, carpets cleaned, appliances immaculate. And that is where the sigh of relief comes from.

Now I can get back to working, driving to see Sara, and tending only one household.

The move and cleaning has wiped us out financially, but what are you going to do. At least with the rest of the deposit coming back I can finish paying the deposit on the house. And then that weight is lifted too.

Michael was great through the whole thing. NOt to say that he was quiet, or a tireless worker, or didn't complain constantly. He was great because when the chips were down, and I told him so, he stepped up. I did have to remind him a few times that he was the man of the house and ought to show me what he's made of...

My honey, Don, really saved my ass, though. He finally asked what he could do to help, and I was ready to tell him. He did a great job painting the kitchen and entryway at the condo, while I cleaned. And then, after I cleared the place with the landlord, he came and sprung me out of the locked garage.

Yes, that's right, I locked myself in the garage. I backed myself out of the house, into the garage (to leave), locked the handle on the door (as requested by landlord) and realized as soon as it clicked that I hadn't unbolted the garage door from the outside. Ransom for being sprung out was coffee and coffee cake before I went to work, tending his every whim and calling him Savior once I got home. To be honest, I was glad to do both. I just love having him around.

So, we are finally out of the other place and firmly into the new. Ready for the next chapter...

4/13/08

Sara gave me a big smile when I came in today. The RT said something to the effect of "If this guy showing up is all it takes to get you to smile, how come you don't smile for me?" Sara's response was a smile for the RT.

I noticed that Sara's oxygen was back down to 28%. It was at 35% when I was there last week. They have apparently been adjusting it quite often, seeing if she could tolerate it well, and then putting it back up. I don't know how long she had been at 28% this time, but she was breathing just fine. In fact she didn't even need me to suction her until much later in the evening.

As usual, we spent our time watching movies on my xbox. She wanted to watch "Snakes on a Plane" again. But I honestly didn't want to watch it again so soon. So instead we watched "Rat Race" I also spent some time flexing her arms and legs. Her legs are regaining a lot of muscle tone. We also worked on improving her control over various facial muscles. Kristina mentioned something about Sara passing a "swallow test" but they won't give her liquids until she has better control over her lips. It would be bad if they gave her something to drink, and it just dribbled out all over her.

Anyway, overall status seems to be good. Nothing else to report really. Oh yeah, She wants us to put up some decoration in her room. She's getting really tired of plain white walls. I'll work on that next time I'm up there.

~Daniel H.

nights are the hardest

I miss her so much. I see her every chance I get, but today I didn't. I actually needed to work on cleaning the old house so we can get our full deposit back, but ended up staying at work long and taking care of things there. My boss told me that i'm fighting a perception that I don't work enough, so I stayed until after 6. By the time I got home I was starving and grabbed Michael to go get some dinner. We came home, sat down together and watched a couple of cooking shows. That's kind of become his and my time together lately - watching Alton Brown combine chemistry, cooking and humor - while choking down something I didn't have time or energy to cook. I fully intended on getting back up and grabbing him and going over to the other house. But, I know better than to stop moving. Once i've lost momentum, well, physics takes over. A body at rest...you know.

So, now i'm laying here on my bed, cat against my leg gently purring, sound of my dog breathing coming from the corner, son asleep with his dog upstairs. I'm wide awake. I will be for hours, crying and worrying, and trying to figure out how to do it all, all by myself. I know that comments will be posted that i'm not alone and so many people have helped in the last 6 months that I get overwhelmed when I think about it. The alone I talk about is the alone that can't be filled by a friend offering to help or knowing that there are other people out there that care about Sara, Michael and me. It's the alone that chokes me when I lay here at night, with Sara's cat against my leg, and the breathing of my dog coming from the corner of my darkened room. It is the alone that says that I can't pick up the phone and have anybody fix this. Or the kind of alone that can't hold me when the tears start and I can't say why. Its the kind of alone that strips you of any armor you have and leaves you standing naked in a sand storm.

I'm not wired like most people, I guess. I'm definately equipped differently than most. I wasn't raised to have lasting relationships beyond the immediate family and significant other. I guess I could have changed that as a young adult - lord knows I changed enough of the other lessons from my upbringing. But I didn't for whatever reason. That is one thing, thank goodness, that I have NOT passed onto my children. I told them early on how I was raised and they wanted different. They wanted friends they grew up with, lasting relationships, and a larger family. Well, I let them know that Mom is out of the baby business, they are too young to get into it, so we'll start building up the family when they are older. I hope I've done right by them, raising them here in Rohnert Park. I see Sara's friends at their jobs, and her boyfriend close by, and see her roots wide and deep. I see Michael with a friend he's had since second grade-more than half of his life and hope i've done right by him.

And then I see me here, feeling alone, and a bit sorry for myself (no comments from the peanut gallery), twice divorced, and mainly only hearing from my boyfriend via online chat somedays and rarely see, no family left except my father and uncle (and for reasons that events, time, and distance cannot repair- Not them...ok...I messed those up, too. Sorry Dad. Sorry Sim.)

I miss talking to Sara. We'd curl up on my bed at night and have great conversations about almost anything. We'd talk about our boyfriends, stuff at work, problems, bills. It was nice to have that kind of relationship with her, that communication. It has totally saved us through this, to be sure. I miss her voice. That lilty, sweet girly voice. Silly things you miss... i guess its not that silly,

I miss talking to Don. Really talking, not just the surface chit chat that scurries across a computer screen. I miss him telling me his thoughts - sometimes the silliest random political stuff, sometimes deep almost philisophical observations, sometimes hopes or little glimpses of the road ahead of us. And his voice. How soothing his mellow purr is to me. He could do the commentary on a golf game and I'd listen...I miss him looking out for me, protecting me. A woman needs that. At least this woman does. I miss sleeping next to him-waking up and feeling him there.

I just called to check on Sara and she's still awake too. She has her teenager sleep schedule back, although they wake her earlier than she wants.

The dog is snoring now. How funny. She's probably dreaming about herding Kenai around the yard...and I'm still awake. And when my back, arm and knee stops aching, and my mind finally quiets from all the things I have to do and what didn't get done today or needs done tomorrow...and I will run in my sleep too.

Physical Therapy

So, Kristina told me that a doctor finally got in to see Sara and see how she is progressing as far as regaining movement. Or rather, The Doctor happened to show up as Sara's limbs were being moved around. The doctor was apparently not aware of how often we do that when we visit Sara and was somewhat surprised. The doctor did a little bit of work with Sara for himself and was surprised at how much muscle tone she had. After realizing how much difference there was to Sara letting her limbs go limp, and fighting the movement as best she can, The doctor asked her how much physical therapy she wanted. To which she spelled out for the doctor: "As much as I can get." So the doctor ordered Physical therapy for Sara three times a day. This is great for Sara, because now her limbs will be getting moved even when we aren't there to do it for her. And its a huge step for her in regaining control of her limbs.

~Daniel H.

Busy Saturday

Busy Saturday.

I came to see Sara as usual this Saturday. Found her trying to use her computer to tell the nurse something. She was uncomfortable and was having a hard time trying to explain it to the nurse. The two of us worked together to try and figure it out. Turns out that she was in a bad position and she wanted to be moved. She didn’t know what exactly what had to be move to make it better.

We got her set up and comfortable and then we played chase the itch. Sara told me she wanted to have her limbs moved and exercised, so I started working with her legs. After I gave her legs a good work out (and lots of jokes about her showing her old man to much leg) I moved on to her arms. When I was working with her right one, I noticed she smelled a little ripe. I asked Sara if she needed a bath and she said yes. I left for a little bit while the nurse gave Sara her bath.

When I got back, I noticed Sara still smelled a little ripe when I was working with her right arm again. I figured the nurse missed under her arms, so I ask Sara if I could clean her arm pits. She blinked yes and dad went to work getting her cleaned up. When I go to the left side, I noticed that she had some gray stuff in her arm pits. I had no idea what I was looking at so I called the nurse; she stated that it looked like a yeast infection. I was a little upset. First of all she had just had a bath and they didn’t catch that? This was not just a small spot, it covered her entire armpit and the skin looked raw. I wanted to talk to the doctor and he and I had a discussion. The nurse said latter that he was getting a prescription for an anti-fungal powder. While I waited for that, I cleaned up the area as best as I could. I washed everything thoroughly. Sara said it stung a little and that was to be expected. I asked if it hurt a lot and she said no. That it just stung. Later when the powder got applied she seemed to have stopped itching so much as was a lot more comfortable.

We watch some TV and laughed at Jeff Duhnnam on comedy Central. The evening was getting late and Sara wanted a few last minute adjustments before I left. I made sure she all set before I left and asked the nurse to keep an eye on here when she coughed because she launched herself several time today.

This post was supposed to go up Saturday night, but I wrote it and then forgot to post it for everyone. I got a reminder from Kristina this morning reminding me that I hadn’t posted it. My fault. Sorry all

Friday 4/4

Sara is doing well. Although I've been sick these last few days I am going to see her today. I'll bathe myself in alcohol gel and mask up, but I miss the kid. I also have her computer to take back to her.

Her computer has been doing crazy things. It needed to be fixed, and they didn't want me to take it out of the room, and I couldn't use my phone to call Dynavox, so it just sat there. blinking. I finally got permission to take it home and call support to fix it. Mike picked it up the other day and I called Yesterday to fix it. All ready for her again. Apparently Sara managed to disable sound...

We are settling into the new house ok. Not much happening as I have been sick. I still have to get odds and ends out of the old house and clean it to within an inch of its life. Today is rent day (actually, the 1st was). Gotta go put that together and pay both places. Yikes. I just keep telling myself that once this is done it is one less thing keeping her from coming home...

And, of course, we all know...there's no place like home...