Morning rituals

Shift work has become the new normal.  I sleep while Bill stays awake and keeps the vigil.  Then, either when I get up, or he gets tired, we switch.  He then sleeps while I keep it going.  

Sometimes when he gets up I take a nap. 

The emotional toll this takes on someone is draining; but there is nowhere I'd rather be.  Ok, yes I would rather not be here, but I mean, with my child when she needs me most is where I want to be.  

Every morning I get up (if it's 3am, if it's 5am, I use the word morning loosely) it's the same routine pretty much.  

Get up, say good morning/good night to Bill who then falls into the most comfortable uncomfortable bed there is known to man.

Stumble to the hospital bed, with or without my glasses, say good morning to Sabrina and let her know that it's my turn to be with her, and let her know that Bill is going to bed now.  I kiss her on her forehead and hold her hand while I tell her this.  

Then, it's time for morning prayer.  I pray with her, on her, for her, on her behalf I ask for continued healing of her mind/lungs/body and to have a good day. I pray that she feels the love of those around her and all those whose lives she has touched and made a positive influence on.  I pray that she knows we are in her corner, and that all things are possible through Christ.   While there are variations of my morning prayers with her, this is the main idea.  

After morning prayers I generally get dressed.  However, before I get dressed, I set up a guided meditation for her to listen to.  There are a couple, but I found one for Traumatic Brain Injury.  She listens while I get dressed. 

After I get dressed, I pull the over the bed side table and a chair up to the bedside, and hold her hand while we finish listening to the guided mediation. Some days I' she is resting well, other days, like today, she is neuro-storming and not resting well.  I whisper to her that I am here, and that although this is may be scary and tiring, she is not alone and draw strength from me because I am here for her.  If she falls asleep, I'll go to the pantry and get something to eat.  But I come right back and sit at her bedside.

At some point a member of the trauma team with come in and assess her for rounds.  I like the NP Rachael.  I like a couple of the other ones, but she's been the most calm and caring through out our stay of the trauma team.  (Mark the PA is good, and Nolan the other NP is good too, but Rachael is #1.)

Respiratory comes in next and puts the physiovest on her to mimic the body's natural cough response.  She can cough, but she needs help getting the mucus moved around. This vest works REALLY well.  (yuck)

Usually while RT is in the room, the nurse comes in to assess Sabrina. Today we have Lindsay, and she is amazeballs.  I mean, seriously....I love her.  And our aide today is Melinda...who is also amazeballs.  Seriously the nursing staff on this floor is great.  We've not had a bad nurse.  Had some that were just "clinical" but they never gave bad care.  The CNA's on the floor are the best, and I've worked with some pretty amazing CNA's in my lifetime.

When everyone is done with their assessments and everything I come back to the bedside (I've only moved to sit in the chair that's about 5 feet away from the bed) I put on a video of a lady repeating the times tables from 1-12 and we listen to that for a while.  

If I notice that she falls asleep, sometimes I just let the video play, but there are times when I just give her a break.  After she sleeps/rests I'll do range of motion in all her limbs.  Sometimes she is resistive, sometimes she is flaccid, but all times we make it through her range of motion on all 4 limbs.  

I try to sit her bed up every day to be at a greater than 45 degree angle.  I don't want her body to remain in a lying down position the whole day, I want her to feel like she's sitting up at some point.  She can't lie down too far because of the tube feeding, but she can lie back farther than I sit her up during the day.  

So, that's basically our mornings  Usually this takes about 4 hours to get through.  It doesn't sound like a lot, but believe me, by the time I look at the clock, it's almost 8:30-9am and I'm thinking "Dang, where did the day go?"  

Next thing I know, it's 4pm and I'm ready for bed. 

I love you Sabrina Dee.  You got this.

Research and learning

I've said it before, and I'm probably going to say it again at some point in my life, but researching something that one of your family members has isn't always the best thing to do. 
However, having said that, because of what's going on with Sabrina, I HAVE to research some things. 
Like, physical therapy for people with anoxic brain injuries or traumatic brain injuries; and how to perform them correctly. 
Like, how to make your own food to fit down a peg tube.

So much information is out there, but not where it needs to be.  Not where someone would think it would be.  I get my peg tube nutrition information from an oral cancer site, and I got some therapy ideas from an article in a newspaper from Texas. 

My knowledge can get me pretty far. My understanding of the human body as a nurse will help me care for her at home.  However, having to dig for the information really puts a damper on things.  Now, I'll find the information, and I'll do everything in my power to give her what she needs.  I just wish it was a little bit easier to find on the internet.  I wish that someone had actually put together that this was a thing.  Maybe they have, and I just have not found it yet.  If they have, I'm going to keep looking. 
I have a gigantic feeling that caloric intake counting is going to be a huge deal in about a month.  Nutrients, micro-nutrients, macro-nutrients,percentages, protein, carbs, fiber.  All that dietary jazz  Guess who is going to be my best friend soon?  The LTAC dietitian.  And if I get nothing there, then I'll definitely be going to the library a lot.  I'll be reading, and learning 
Maybe I'll go to school to become a dietitian while I stay home and take care of Brina. 
Oh.  Wait. 
We need my state benefits to help care for her and to pay for doctor visits.

Our life has changed drastically.
Not for the worse, just drastically.

New knowledge has to be taken in.  New responsibilities have to be taken on. 
This is our life now.

Research, and more research.
Learning new ways to do things.  Learning new ways to do almost everything. 
Learning how our family works now.  How this new family dynamic will be.

This is the new us, and I love us.

Leo and his band-aids of wonder!

My brother and 2 of his sons came to visit Sabrina this past weekend.
It was a good visit, got great results from Sabrina from it.
The best thing however, was my nephew Leo.  He has the healers heart and touch.  He walked in the room with Sabrina and instantly touched her arm.
He became very concerned about her getting better.  He even told me that he has his own medic first aid kit, which he brought inside with him and proceeded to place bandaids on Sabrina to help fix her boo-boos.
I don't want to disregard my brothers complete and udder agitation of Sabrina to get a response out of her, but seriously, Leo really was committed to healing his cousin and he did a great job.

He placed one on her left leg, and one on her right arm. They are still there.  I let my brother know to tell Leo that his bandaids are still in place and working their magic.  I got a big 2 thumbs up from Leo.


Thank you Leo.  Your cousin was in need of your healing touch and you gave it to her.  You are awesome.

Trach and Peg

Kinda sounds like a tavern name doesn't it. 
"Hey, ya'll wanna go over to the trach and peg and knock back a few?"
Except it's not. 

The next step in our adventure was getting a tracheotomy and peg tube placed.
Tracheotomy so she can get the intubation tube out of her mouth and away from her vocal cords.
Peg tube so we can get the feedings to go directly into her stomach instead of in a tube down her throat. 

Happy to say that surgery was successful.  She's definitely resting better, and not gagging as much.  I mean, if I had a tube the size of my thumb down my throat I'd probably gag too.

After coming back from surgery, I washed her hair, brushed it and put it up in a bun like she always does.  I also washed her face.  Seems she has a possible allergy to the antimicrobial wipes they use and decided to get all rashy.
I'll probably take the bun out today so her hair can finish drying.  Last thing I need to do is have her hair smell like mildewy mold grossness.
Also, yes, I know she'll probably kill me for putting pictures of her like this on the internet, but this is going to be a long road, and I want to document it.  If for nothing more than just my own personal therapy session.  Or maybe I can look back on this and say "Oh that's when that was", because I'm really not good at time frames.  Especially when it involves looking back in time.

So, buckle up....our travels have begun. 
I don't know where they will go, but I know one thing: it's already been a bumpy ride and the rides just started.