Please play

Has it been a week already?

Time certainly does fly when you're having fun. And, despite the challenges and frustrations, it has been fun. I love to see her laugh. And, it turns out, all the laughter seems to be helping her.

I interviewed nurses over the weekend. There are two I am requesting scheduling with - Dawn and Robin. If I can get the two of them (maybe a third), I can resume full-time (at my desk) work and still have time to take care of other things and have help moving her for therapies and bathing before I'm on an overnight care shift for Sara.

She got her first sunshine in 11 months yesterday. I got her up and into the wheelchair and we rolled out onto the deck portion of the ramp. She loved it. Couldn't see, but loved it. She finally spelled out "sunglasses". So there she was, sitting on the front porch, breeze blowing, wearing her shades, enjoying being outside. She even laughed when she got her first "stare". I told her that unfortunately it would be the first of many. She said OK. So we sat out there for about 45 minutes, soaking up the day. Then went back inside and sat next to each other and held hands, watching TV. She tolerated the chair for 2 hours before I decided to put her back to bed. She wanted to stay up, but her face was starting to get pale and she looked tired.

I can't even get my head around everything that has happened this week. I have gone nonstop since her discharge. Once the nurses are here and working I should have more time to keep the world up on this amazing girl.

Oh...and she's ready to start receiving emails. I'll help her navigate her computer for responses.

Everything's fine...

She's doing ok. We're doing ok. Still waiting for nurses, so handling everything ourselves and with Team SARA.

Sara is just plain happy. She said she has slept so good since coming home. She's stable, no major issues, and settling into a routine for the day. Just like a teenager, she does not like to get up in the morning and gets all grumpy faced when I have to give her meds, treatment and move her and suction. Kind of a lot first thing. But, today she got to go back to sleep... Ah...that would be nice. LOL

Dusty curled up on the end of her bed and used her foot as a pillow. That is, until she got a muscle spasm and kicked him off the bed. Fly kitty! That'll keep him young...

Well, i'm going to go call the nursing service and yell - then go take a nap. Michael stayed home today to help take care of her so I could rest and work. Both of which I needed to do desperately. I need to do a lot more of both.

My babies are together watching movies in her room. So nice.

Breaking Point.

Third day home and the stress around the house is so prominent it's almost palpable. Mom has been taking care of Sara almost exclusively since Sara came home. We had some help yesterday and lots monday night, but none today.

Mom's behind on work and needs to get stuff done so tomorrow (Thursday) I will be home, taking care of Sara, so mom can get work done and keep her job.

Today really has been stressful, though. Sara's oxygen sats have been sitting low most of the day (dipping under the 85% mark, setting off the alarm... god I hate that alarm) and her mucus has been really thick and hard to suction out. she got into a real bad fit of coughing where her sats actually dropped down to about 70%... I got pretty scared there. But anywho, Sara's doing well now, her sats are good, and it's time to go to sleep.

...I forget what else I was going to write. Whatever. I'll update tomorrow. As for now, goodnight.

Homecoming Pix

Ambulance at the house! OMG...she's RIGHT there...

She burst into a silent laugh as soon as the wheels of the gurney hit the driveway...

Settled into her room, hours later, with her beloved next to her. This is about 4 hours after she got home. It took us that long to get everything all right and hooked up and cleaned up and changed over, etc. Six people flailing (ok, I was the only one flailing), overcoming equipment issues, supply finding, first medications, breathing treatment, etc...just to get her to this point...

Kitty Kitty on his girl. Kind of says it all right there...

Sara getting a breathing treatment while Kenai gets to give her a hug. The dogs have been great. They look in and want to go see her, but they wait for us (for the most part) to tell them its ok.

During the day they pop up in her window to say "Hi".

Happy brother. His world seems right with his sister home. Her world seems right being near her brother, too.

Even with sibling rivalry (and sometimes outright war) I guess a lot of parents might not see just how much their children love each other, until something like this happens.

I'm just grateful that Sara and Mike got past the rivalry stage and started hanging out and talking on long drives before all this happened. It helped make them both stronger to get through this.

The nurses haven't shown up in two days. I've been taking the brunt of the care as we get coverage worked out. It is exhausting at this point. But I remember this from actually having the baby...no sleep for new parents...feedings every two hours...diapers...responding to cries or sounds. The biggest difference is its feedings and medication every 2 hours and listening for the muffled cough in a traech tube...

well, that and the baby is about 200 pounds heavier... :P

HOME!

That's right. I'm in my bedroom on the second story typing this post and Sara is in her bedroom downstairs talking to people with the computer and the Apria Healthcare guy is fixing our oxygen machine thing.

But the important thing is she's home. We had to kick some asses getting her here (getting the doctors and discharge planner to clear everything), but she's here. The ambulance people showed up at about 6pm to the hospital, we left at 7pm, and we were in the house before 9pm. She's been stable and very, very happy for the past two hours. She's glad to be home around the people she loves, the sights and sounds she misses, and the animals. I let Kenai (our border collie) into her room and her face lit up like a christmas tree.

I'm so glad she's home. No more hospital bureaucracies, no more cross-contamination, no more bullshit. Just Sara, the nurses during the day, and her family and friends. It's going to be wonderful for her state of mind to be around the people and places she loves and remembers.

And to think, it was almost 11 months in hospitals (next week, the 24th, would have marked 11 months). Eleven months of bleak white walls, alarms going off in other rooms, a plethora of nurses and medical equipment, people telling her she can or can't do something. Now it's different... medical equipment is still around her as we need it to ensure her well being, but it's the reassurance that we will help her and push her to do anything she wants, the bright colorful walls and personality that resonates throughout the house, the ability to hear her family going about their lives in the other rooms, knowing that we're not more than a minute away from her.

If home isn't what's best for her, I don't know what is.

Still, though, she's home, and now we can begin a life anew for Sara. I'm excited and ready to see what the future will hold.

Twenty Questions.

God damnit.

It appears as if those in power are questioning our ability to care for Sara at home and are delaying her discharge. Mom is working feverishly to kick some asses into shape and get Sara home, and I am sitting in the corner of the room typing this blog post and readying myself for action. Mom can be scary when she's mad, but I'm the real heavy artillery. Hopefully I won't need to spring in to action, but I should always be ready.

Mom is really working hard with the discharge planner right now to get all the medications we need for tonight and tomorrow so we can get her out of the hospital. Mom's got her eyes on the prize and I don't think anything will get in her way.

Sara is coming home. Today. Or else. There's no two ways about it.

-Michael

Cleared for Takeoff

So... the doctor signed the discharge order, it's approved, we have most of (but not all of) the equipment we need, our house is almost completely ready, and everybody is ready for her to come home.

We're sitting in the hospital sending out text messages and making a blog post, talking to Sara and just killing time.

She seems really happy and excited, and she keeps saying silly stuff like "badger badger badger" and "the game" and I can only imagine how glad she is to be coming home.

We decorated (well, not me or the family, but her friends) her room last night, and I am sure she will love it. There's posters and stuffed animals and stuff everywhere, her room has so much character it's astonishing. I'm sure she will love it. It's such a huge contrast to the bleak white walls of a hospital or the hospital equipment all around her.

Pictures from Sara's final day as well as pictures of her at home and more information will be forthcoming.

-Michael

Passed our inspection - cleared for discharge

Today the Kaiser Santa Rosa home health people came by to inspect the house, check the equipment and assess whether we were ready for Sara to come home. I am happy to report that they have signed off on our preparation and are recommending her discharge for Monday.

Its a little surreal now. She's really that close to coming home. I'm not going to believe it until the ambulance backs up to the house and I see her face appear in the sunlight.

The bathroom is not done, but it is not going to hold her up. I told them that she will be bed bathed like she has been in the hospital until it is done. They liked the roll-in shower design and said she'll really enjoy it when its done. The contractor that was helping had to drop out to work on his normal work. Thanks for the help out that he was able to give. It made a big difference in prep. I'll be resuming on that tomorrow.

Sara's room is ready to decorate. So, any of her friends who would like to come over and start putting things up in her room, you are more than welcome to. We still have to put outlet covers and a switch in, her lights, and the shades, but that won't interfere with putting up her artwork and collections. We'll be home all weekend. Anybody is welcome all day saturday and late afternoon sunday.

On the Michael front - he's doing well. He and I have both been sick all week. I'm still feeling about half cruddy, but I have to be nearing the end of it. He seems fine now.

I'm still half believing she's actually going to be in this house on Monday. I know its going to be a different type of tough, but just having her here seems to make it feel a lot more possible to get through.

I can't thank enough the people who, directly and indirectly, helped us along the way. There is absolutely NO way we could have made it through this horrid first chapter, the first 10+ months since her accident, were it not for those close to us, to her, and the unending stream of loving thoughts that come our way daily. There are so many times I've caved in thinking I couldn't handle another second, and then i'll see a friend of Sara's in Target, or get a phone call from someone asking to help, or see that the blog has been read, and its not so bad. Seeing her always makes it worth it. What an amazing woman... Hard to believe she's my baby girl.

Getting Sara home is by no means the end of the road for us. It is the start of a new chapter for Sara. One where she is able to be a part of her own life, participate in the lives of her friends, continue her love affair with Daniel, witness her brother's final year of high school and his launch from the nest, and her continue to heal and grow. Its a chapter where we will see her start to move, push herself, work to breath in life - deep and full, and where we will start to hear her voice. She is communicating more each day via computer and it will only expand once she's home and I can work with her on it and programming along side her. She will also be working to get clear of the traech and start to work her own vocal cords. Once she truly gets her own voice back...watch out. But even before then, there are going to be things she and I are going to share that we have to do together, so that people understand what was really going on. Some things got held from the blog, other things only recently discovered, and still others that we were slow to explore out of fear and pain.

But, that aside for the moment...the plan is to discharge from Walnut Creek on Monday. Michael is going to come with me to help make sure we get everything and hopefully he can ride in the ambulance with her. That's going to be a long trip. Her Dad, Mike, will be here at the house to make sure that the nurse has everything they need to setup to receive her and get started, and run to Kaiser Santa Rosa if we are missing anything critical. Daniel is at school on Monday so he has to do that. He is the very first person she wants to see at home, in her own space. I suspect that Nanci and Kelly will want to come by and see her and the setup we've all worked so hard on - and Sara finally in it. Team Sara - please remind me to give you each keys to the house. You will always have access to her for emergencies and if you just want to fly by in the middle of the day to say hi and check on Sara and the nurse...or as we rotate some of her care times.

As for visitors - give us a couple of days to get her settled in the house and we'll start opening it up. Don't want to overwhelm the girl.

I can't wait to see that sweet face around the house...right where it belongs.

another day with Sara...

Yesterday... I had the chance to hangout with Sara... and this time we were working on a puzzle... lots of smiling laughing and just if you get to see it you too will be laughing like her... I just can't believe that she is one day closer to coming home...

Updated schedule

Well, back and forth continues...

We have nurses so I called Kaiser and they said she can move anytime. Asked me if Kaiser Santa Rosa home health had contacted me yet. Well, no, I replied. They were supposed to have come out already. Apparently they didn't get the word about that. Sara can't come home until they come "inspect" my house. Now that is scheduled for Friday morning.

That means the soonest she can come home is Monday. So we are pushing for Monday.

It happens to work out ok as of today, anyway. Michael kind of had the sniffles on Sunday when he got home. By last night he was really sick. Well, I got the flu from him, so we've both been home achy, coughing, stuffed up, sleepy, and other expressions of yuckiness. What a way to spend the day. I could hear him. He could hear me. Neither of us could muster the strength to go take care of the other. This afternoon we propped each other up and went and got flu meds, juice, soup, crackers. We're going to curl up under a blanket with some soup cups and watch some TV together in a little while.

Don offered to change up his schedule and come take care of me and the boy. I told him no, just come tomorrow like planned and me and the boy would tough it out. We'll both go to school and work tomorrow. Michael can't miss much school, and I can't miss much work. Both get a little sideways.

Sara is in great spirits. I saw her last night. I am really, REALLY hoping that I didn't get her sick. I was very careful with contact, but didn't wear a mask. (big dummy..) I'll know probably tomorrow, as it seemed to take about two days to set in.

In any case, while I feel halfway ok right now i'm going to get a little cleaning done. I put an e-collar on Gracie so she'd stop shredding her fur all over the house and I have to vacuum up the puppy fur balls she's tracked around.

OK...so it didn't happen today...

but we knew it wouldn't when the nursing service had the other nurse drop out. We still keep moving forward, because it is close, regardless.

SO...here's the latest:

WE HAVE NURSES!! They've signed the second nurse (and an additional one) and we now have staff available to cover the 6a-10p shifts.

That means she's one step closer to home. OMG...just the thought of it...home. my daughter at home.

All day long i've been up and down and back and forth. almost as bad as anticipation of labor. when is it going to happen? feels like now... nope, not now. false alarm. ooh...a twinge. now? ooh, another twinge...pace back and forth...fret fret fret... The funny thing...I was almost 30 days overdue with Sara... its taken longer to get her home this time...but not by much.

SO...I have to get a home health inspection by Santa Rosa Kaiser and then they back the ambulance up to the hospital, roll her out and drive her home.

OMG...now i'm having a panic attack. My house isn't clean (hey, we've been working! and the dogs been shedding), i have to get gloves, bed pads, sterile water...ack! I did order the pulse oximeter/heartrate monitor. It will be here Thursday, so that will have to be the soonest she's home.
My head is spinning. I think I need a nap. No time! Got stuff to do.

I'm about to have a baby girl!!

We just have way too much fun…

I'm at the hospital today hanging out with Sara... Michael, Sara's brother has decided to get a cold and pass it along to his mother... so she was not able to come out... since she was feeling under the weather... since I made some free time from studying... it's always a pleasure to see her...

Today I was presently surprised to see that she was out of the bed and in the famous cardiac chair... and when I walked in the room... she gave me one of the biggest smiles... since she knows that we're going to be laughing, smiling and just being silly... and today was no different...

here is another photo of Sara in the chair...

It was nice to see that she has been spending time in the chair... so it helped us to work on some new physical movements like sticking out her tongue...


also, I had her laughing for almost an hour telling bad jokes and stories about her cat ( Dusty) walking all over me when I'm sleeping...

One of the things that is so amazing about Sara is that she has her sense of humor... and she knows how to get me to have one of my belly laughs... working her eyes into being crossed and I always tell her if she keeps doing that they will get stuck...


From all the laughter that we were having she blew the cover off of her tube... I decided that I couldn't take it anymore... I had to cover her eyes so I could stop laughing... this is all I had to deflect her powers...




As you can see... we still have way too much fun...

Amazing progress

I am talking about on the home front. Saturday friends showed up to keep working on the house, and we even saw some new faces pitching in.

Kelly has a contractor friend, Nate, who has come in and relieved me of the bathroom...at least the "heavy lifting" parts. What a godsend. He got far in prepping the floor, and I will finish that prep this week. I'll also install the plumbing fixtures and overhead vent. He'll come back next saturday and a mortar floor will be put down.

Kelly and her children made a huge pile of green clippings (from the trees) into several loads of smaller clippings. The back yard is starting to look actually pretty good. The view from Sara's room is much less opressive (with the two mulberry trees blocking the sun and everything between...

Mark put up the shelves in Sara's room. She's really going to enjoy having her stuff visible. Her room is such a bright, happy place. Good place to heal and be safe.

Sabrina, Daniel C., Susan and Scott finished the ramp. The siding is on, its painted and the non-skid applied. It looks like it belongs to the house, which is perfect.

We've been whittling down the notes on the "to do" wall and the "done" wall is really full. I've started going around making notes about stuff that I missed the first time. There's not that much.

I remain grateful to the kindness of friends and strangers, alike. I am constantly amazed at how many people love Sara. I know i'm not the only one, just the first one. But it makes a mother feel so good to see that her daughter is loved by so many people...

sitting up is scary but I am usually okay once i am up

Getting buffetted around pretty good...

Sara is doing great. She's stable and all smiles. I went there yesterday and all she wanted me to do was talk. I talked straight for almost 3 hours until I couldn't anymore. I told her about the weekend, the people, the activities, the plans, work, her brother, everything. She says it all sounds "interesting" and wants to see it. She said Dusty's paw prints in the cement will be "funny".

So she knows we are shooting for rolling her out of there on the 10th...but we just had a setback. The second nurse for her team has decided not to do it and go another direction. So we only have the one nurse. She wants to meet Sara before she starts - so i'm going to have to pay her and drive her to Walnut Creek to meet Sara before she'll officially take the case. The nursing recruiter says he has someone else that he thinks would be an excellent nurse for Sara, but she is relocating to her and he doesn't know when she can start. I asked him if we were going to have nursing available for a bring-home on the 10th and he said likely no.

I feel like i've kind of been kicked in the stomach. First i'm not getting the bathroom done fast enough that we may have to bring in a contractor (even though its something I really want to do myself..for her) and now we are only 50% staffed on nursing for next week. So it looks unlikely that she'll be home on Tuesday...now it just floats until the nurse is staffed. I'll still finish the bathroom ok... obviously with help.

So i'm still going to move like its Tuesday, but my shoulders aren't up as far as they were...

The love and support of friends

I have to say that today goes down as one of the truly memorable positives in my book. I should actually say the combined today and Saturday.

Saturday only saw a few people come out to help. It was short notice for that day and many people already had plans. And, truly, I wasn't totally ready.

Scott and Susan have been tireless in getting the ramp ready to bring Sara home. They got the ramp reinforced and the concrete busted out and the beginning of the ramp poured and set. We even had Sara's cat, Dusty, do the honors and put some pawprints in the goo. Had him walk over it a few times just for good measure. The pawprints are so cute and I know will be very special to Sara. (Scott and Susan came Saturday and Sunday, in addition to a couple of other weekends they, and Sabrina, have been here getting the framing in and ramp all perfect.)

Nanci came and helped me get myself organized and really thinking about what actually needed to be done. She calmly unknotted Sara's favorite beaded curtain while we talked and I made notes.

Daniel brought muscle to the party and got started with the hauling process. I wasn't going to call and ask him to help, because he has been doing so much, but we needed the muscle.

Sunday we rested. If I don't go down one day a week I am useless for everything. I still don't think I napped enough...

Today was just incredible. Kelly and her youngest daughter Natalie showed up. Kelly is an absolute angel and tireless powerhouse. She is go-go-go and that's what she did all day. I don't know everything she did, but the notes on the wall whittled down and were re-organized several times, based on importance for today and the next week. Her father and mother came, as did Michael Jordan (ours and Kelly's former landlord and family friend), Jerry (handiest man and his sidekick son), Kim (landscaper doll who really perked up the front for Sara's homecoming...and her australian shepherd to hang out with our dogs). Dave Hattem, Daniel's father, came and jumped in anywhere he was needed. He skinned the ramp and did all the cutting jobs for me today, so I could concentrate on finding things for people and getting the drain and layout done for the bathroom (and the subfloor all closed up.) Dave also grilled me (in jest, of course) to see if I REALLY knew how to float a mortar base for an entire bathroom and what the next step would be...(40mil barrier, up from floor, 4mil plastic down walls to inside 40mil barrier, in case you'd like to know... :)

Kelly's mom, Edie, went right to the sewing projects. Before the end of the day she had beautiful material, had created a pattern for the house/hospital gowns, had removed the elastic from what is going to become draw sheets (half sheets we put under Sara's butt, under waterproof pads in case she soils, that helps us reposition her in the bed or wherever she is.) She took a pile of material and notes home to sew throughout the week.

Don's mother, Deborah, is also doing some hospital gowns at her house in Sacramento. (silly stuff, like Sponge Bob...)

Michael Jordan and Kelly's Dad (forgive me not remembering your name) made short work of the trees in the backyard. Michael joined them in taking down this silly barrier fence that served no purpose in the middle of the yard. The backyard looks so large and inviting now. And, we have a nice large shaded area under the trees to take Sara if the house is just way too hot. Kelly's dad also hung her favorite wind things in the tree just outside her window. It will delight her to see.

Jerry took care of fixing what I munched up in Sara's room with the paint. I have never done a sucky cut-in job before. Well, I did this time and never had the time to get back and fix it. He covered my tracks and the room looks awesome. We can finally put the shelves up so her friends can decorate.

Don came up with a great idea as we were getting ready to get the shelf material. Use wire shelves instead of solid shelves, and put plexiglass on top so she can see through it to her stuff. She loves being able to see her collections. Everything Sara has in her room has a special meaning to her...and the accumulation of her stuff tells her story. I didn't used to understand that (although she told me countless times)...until after her accident and I sat in her room. Then it was crystal clear to me...

A few of Kelly's and her mothers friends popped in and jumped in wherever they could. Post-it notes with all manner of jobs came down off the to-do wall and found their way to the Done wall.

JJ, a dear friend of mine and Don's, came and brought food and snacks, drinks and went back and forth shopping for us. This sweet woman is recovering from surgery herself, but wanted to be here for us, for Sara. JJ, you are a love and I feel bad that I haven't been able to be there to take care of you. Your heart is as big as your beautiful voice.

I am sure I am missing people and for that I beg forgiveness. I am truly overwhelmed by the generosity of people. Giving their time to come help us get ready to bring her home is very special to me. Time is so very precious. I sit here on the verge of tears of gratitude - the only kind of tears I have left.

Our family is truly blessed with the love and support of friends, near and far.

Thank You, Thank You, Thank You.