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.