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.

The post that is 18 months in the making.

I'm starting this on 9/17/17.  I've decided to do a cheezy cheezy thing, and when  I sign my e-mails to Stephanie while she's on her mission, to put some kind of church related saying.  So, here goes, starting with tonight's:

9/17/17- I love you Hermana Woerner, go and do the things the Lord commands!
1 Nephi 3:7

9/20/17-Found out that Wednesdays are her; p-day at the MTC.  (That's preparation day at the  Missionary Training Center.)  So, while she's there she'll e-mail on Wednesdays.  She also told me today that she can read her e-mails all week, but can only answer on p-day.  So, I guess I'm going to start signing my e-mails with the same signature all week.  I had one picked out ,but it slipped my mind.  It was so good too!  But, I guess it just wasn't in the cards.  I'll think of something.  It's been nice to be able to "talk" to her today.  I e-mailed her back, and she actually sent another e-mail back to me!  The things that warm this missionary mom's heart! 

9/24/17- Abide in the Lord Hermana Woerner, Love you!
John 15:7 

10/02/17--Grace be with you Hermana Woerner!
Hebrews 13:25

10/08/17- Walk with God Hermana Woerner!!
Doctrine and Covenants 107:49

10/17/17-I know I had said I was going to sign all my e-mails all week with my cheesy saying, however; I have not been.  I guess I'm just being super lazy mom when it comes to e-mailing her, and putting my weekly signatures on. LOL  I wonder if she's noticed yet.
I also found out, that when she gets to Houston, they take away their tables for 8 weeks. :O Oh my goodness!
So, here's this weeks signature. (I'm running a little late this week with the big e-mail for her.)
-Be meek Hermana Woerner.
Mathew 5:5

10/20/17-Stephanie's roommate has asked me to write to her.  I was having some issues last night, and needed some extra prayers, so I asked both of them to pray for me.  I feel much better this morning, so I thanked them.  I signed the e-mail Be bold as lions my dear hermanas!  It's from Proverbs 28:1
When I send Stephanie her big e-mail I'm going to sign it this week from the same chapter in Proverbs, and It's going to be: Walk uprightly and and be bold as a lion!  So, that's a combination of verse 1 and verse 18.

10/23/17-sent Stephanie her big e-mail tonight, and I signed it just how I said I would. Walk uprightly and and be bold as a lion! 

10/30/2017- This is the first Monday p-day.  I totally spaced that it wasn't going to be on Wednesday this week. LOL, Last night I got all excited that today I may hear from her!  So, I e-mailed her this morning, here's the signature this week.

Walk by Faith Hermana Woerner, I love you.

2 Corinthians 5:7

I feel like at this point I should point out that all my biblical references are from the King James Version of the Bible.  You may find that the references fit into/from other versions, but the  KJV is the only version of the Bible that our family uses both in Church, and at my children's school.

11/5/17- Be a city on a hill Hermana Woerner, and shine your light.

Mathew 5:14

11/13/17-God will lead you by his hand, so let him take you where he needs you Hermana Woerner.
Abraham 1:18
I'm late this week writing her e-mail.  I had to work 4 days in a row, and I totally missed out on my ritual sitting on the couch writing to her about the musings of the week.   I miss her more today than I've missed her the whole time-and that's saying something, because I miss her terribly.  I hope she knows how proud I am of her, and that I love her dearly with all my being.

11/20/17-I've had a tooth pulled this week, so I'm not feeling the best, and I almost had decided to not send anything, but then I remembered something that Hermana Hudrlik had told me.  She told me that she loves getting my inpirational e-mails... so today's inspirational quote is late, but here it is.

Don’t forget to give thanks to the Lord!  It is the week of thanksgiving, without his mercy what are we?  Thank you to you both for your sacrifice in the work of the Lord.

1 Chronicales 16:34

11/27/17- Love you, and Remember, if you lack wisdom, Ask God!!!  (I am!)
James 1:5

This week while e-mailing her, one of my charge nurses texted me and asked me to pick up her shift tonight, because her grandma passed away last night.  Totally need to take this advice and ask what to do, because I'm torn!  Do I go? Do I not go.... :( 

12/10/2017-I didn't feel well last week, so I didn't/wasn't able to add on my quote.  This week, I was looking for a Christmas quote, but I instead I found this: Romans 6:23  For the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord.
I'm going to say that the greatest Christmas gift we are given is eternal life from our Heavenly Father, which was made possible by Jesus Christ, so go share, and tell people of his amazing gift.

1/5/18- This isn't really from a biblical source that's specific, just motherly advice:
 I love you dearly, and miss you fiercely.

Serve the Lord well, and know our Heavenly Father loves you.

1/7/18- This past week President Monson passed away.  So, this week I decided to send quotes from the prophet that I felt would help them.  I did send a combination e-mail because I don't feel good. (Stupid cold) so when I went to see what quote I wanted to send, I actually got prompted to send 2 different quotes.  Here is what I wrote:

“Remember that when you help another up a mountain, you are a little closer to the top yourself.” -Thomas S. Monson 

This one is also a good one-I mean he has SO MANY that are SO GOOD, but this one jumped out at me when I was praying about what words of encouragement to send you guys this week. 

“Rather than continually dwelling on what still needs to be done, pause occasionally and reflect on all that you do and have done.” –Thomas S. Monson.

1/14/18: This week I feel I need to remember that there is a season for everything.  (Not a Season Dow, but just a season)-This was in Stephanie's e-mail; not Hermana Hudrlik's.  God knows what we need in our lives, and he knows what season we are in our lives.

Ecclesiastes 3:1

2/12/2018- I'm having the hardest time keeping up with this. I feel like a horrible mother who can't seem to keep her head straight.  So, here are the past ones that I've done, but didn't come here and update, because apparently I don't know how to manage time.
This one is in my phone from the New Years Day.  Not sure what day it was sent, but probably the first, since it was a Monday: Remember Irene.  help cometh from the Lord, so look to Him in times of need.  Psalms 121:1-8

On 2/4/2018 I wrote: Keep being  great example, even to the believers!  We need examples too. 1 Timothy 4:12
This week I didn't write anything.  Last week Stephanie asked me to write to her more often.  So, this week I wrote her every day.  However, I forgot to put in my  spiritual comment this week.  Ho hum.  Just more difficult that I thought it would be to keep up on it.

3/4/2018 L:  Walk tall, you’re a daughter, a child of God!!!

3/11/18: Be pure in heart, and liken yourself unto Christ.  I know it's hard, but I believe in you!

Mathew 5:8

I have been so behind on doing e-mails to my poor hermanas.  I feel HORRIBLE.
Every time I say I'm going to be better, I do for a while, and then go back to not fitting it into my life.  These girls are important and need my love and attention!!!!!!!
So, off to write some e-mails!


So, I totally wimped out after like, 6 months.  Total fail!
I mean, I wrote e-mails, but no more inspiring quotes or stuff like that. 

AND she's been home for like, 6 months.  So, I didn't even post this on time!
Such a slacker person I am.

Happy Birthday Sabrina Dee

Spent Sabrina's 19th birthday in the hospital up in Jackson, Michigan. 

Not exactly how it was suppose to be. 

Sabrina was involved in a roll-over accident, and when the truck rolled, it landed on her.  We are currently in a waiting game.  

Keep the room quiet.

No TV, no radio.

Speaking only in hushed tones.  

No touching.

All this is to get the brain to concentrate on one thing.  Healing itself. 

They don't want her brain to worry about stimulation.  They don't want her brain to think about "What sensation is that?"  All they want her to do is heal. 

Because then, and only then will we know the extent of the damage.

Happy first day of being 19 little girl. We're in this for the long haul.

Your family loves you.

We are all in your corner, and your corner is super full.