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