Let's play doctor .. part II

Day #1 IN the hospital.

They take her to do a scope of her esphagus

Lots of pain .... even with meds.  Miserable.  Nurses keep trying to get her to take sips of water.  You would think she was being made to drink acid.  She can't even take a deep breath without crying.

I go home to sleep.  Exhausted.  I can't remember the last time I've literally wanted the floor to open up and swallow me whole.  Have to be there for Hayley at the hospital .. yet for some reason .. my house doesn't stop.

Day #2 in the hospital

Dr. comes to the room.  Results of path are back from biopsies of the esophagus.  Basically the mucosis liner is gone.  Nothing left but raw to the nerve.  Swollen.  Raw.  Red.
He said it's the worst case of esophagitis he's ever seen.  Looks as if she swallowed lye he said.  She can't eat or drink for a reason.  The healing will take a long time.  Possibly months before it's completely healed.

Causes?  Either an allergic reaction to the antibiotic she was on .. or a virus.  Or combination of both.

Now comes the choice as to how she's going to get nutrients.  Pic line or feeding tube to the stomach?  Feeding tube would create a scar on her stomach.  So pic line it is.

After she heals some .. they will do another scope to see what the permanent damage will be.  He said most likely because it's so severe .. she will have scar tissue and constriction.  He also said she will have to have multiple procedures done to expand areas so that she can eat meat and breads without getting stuck.  Possibly these procedures will need to be done for the rest of her life.

SERIOUSLY?

Shocked.  And not happy.  But then again ... at least I now have a reason for the pain.  And that she wasn't just being dramatic by not eating or drinking.  Now ... no one will be asking her to try to drink water .. or to take a pill .. and watch the horror that is the result of trying those feats.

Day #3 in the hospital

She starts getting sick at her stomach.  From the pain meds.  Then she tries to throw up.  Honestly .. I've never seen anything like it.  My heart felt like it was being pulled right from my chest.  The worst pain imaginable.  If I thought it was hard to get something DOWN ... the stomach acid coming back UP was 1,000 times worse.  And absolutely nothing I could do about it.  Helpless feeling..

There's a lobby outside her room.  That I've spent some time in.  Mostly when it comes to taking her blood ... or doing the IV .. anything related to that ... can't do.  Don't do. For real.  

Day #4 in the hospital 

Started off awesome.  She got in the shower.  Washed her hair.  Put on her makeup.  Brushed her teeth.  Was looking pretty good.  Then as soon as we were getting comfortable ... the throwing up (well.. not anything to throw up really .. but the motions were still there) started.  All over again.  

By the time the sun went down .. they figured out how to regulate pain meds with anti nausea meds.  It's a dance.  It was sweet relief for all of us.  

Over a week without food ... hip bones are showing ...

Flowers and balloons started to roll in (thank you friends)

I don't do well sitting still  It's no secret.  My leg bounced out of control most days.  Sitting ... for hours ...isn't what I'm good at.  I found things to keep myself amused.  But Hayley was not as amused.  Got some online shopping in.  There's SO MUCH on the internet to buy.  Who knew?

Her pic line.  She was actually morbidly excited to get this... as she was tired of being stabbed and bruised.  Guess I can't blame her...

Day #5

My sister and Travis come to visit.  Nati brought her a mermaid barbie to play with.  Her and Travis hung out for hours.  He played with her .. they played mermaids ... games on the iPad ... blew up latex glove hands .. brushed teeth.

It was so healing for Hayley.  This was the first time since she got to the hospital that she genuinely smiled.  The real deal.

My heart and soul were happy for her.  Exhaled a little.  Knowing healing is taking place.

Then we crash again that night.  It's so frustrating to see her so good one minute .. to just a mess the next.

At one point she said to the nurse "I'd like a shower" ... nurse leaves .. Hayley falls asleep ... nurse comes back in ... wakes Hayley up to wrap her IV's .. giving her fresh towels.  Hayley says "um .. what are you doing?  I didn't ask for a shower"

Good times.

Day #6 ...

I walk in bright and early .. hopeful for the day ahead.  Immediately it looks different as I walk up.  There's all this hazmat s*** on the front of her door.  With a BIG stop sign.  That before entering ... there's a process you have to go through.  Including putting a gown on .. mask .. gloves.  Wha??  How did this change from 10pm to 9am?

I walk in the room slowly .. not sure what to expect.  Okay .. same child.  Same bed.  Nothing unusual.

Go to nurses station.  "hey .. what's all the new-I'm-going-to-die-if-I-enter-my kids room-decorations on that door mean?"  They look at me.  They look at each other.  Um.  Well professionals?  SOMEONE put it there.  The best one could do is give me a pamphlet on infectious disease and how to protect yourself from someone who is sick.  OKAY??

I walk back in the room (without my gear on) ... few minutes later the nurse comes in to do vitals.  Dressed like she's in a bubble.  Hayley slowly opens up her eyes.  Rolls over.  See's the nurse.  Eyes wide.  "WHAT THE FREAK IS WRONG WITH ME MOM?"  Yeah ... good question Hayley.

Infectious disease dr. comes in a couple of hours later.  Stops to read the sign.  Puts the suit on.  Walks in and says "Um .. why all the extra precautions?  Why am I wearing this?".  Good question dr.  She leaves and magically all the stuff comes off the door.

The weekend crew checked in.  Nuff said.



Day #7

I walk in ... to a migraine.  Seriously ... MAKE IT STOP!!!!!  She sleeps most the day today as well.  When she woke up I had an announcement for her.

"Hayley .. this is the VERY last depressed ... vampire day ... for us.  Make sure you soak all these dark .. depressed .. pain ridden moments up today.  BECAUSE IT ENDS tomorrow.  Tomorrow I will walk in here .. pull up the blinds.  All the way.  I am going to sit you up.  I am going to help you take a shower.  You are going to shave your hairy legs.  You are going to wash the birds nest hair.  You are going to brush your teeth.  You will get back in bed.  And we will play games.  And read magazine articles.  And we are going to smile.  And you are going to laugh at my jokes.  DO YOU UNDERSTAND??  Because I am sick of this hell hole we live in.  WE ARE GOING TO MAKE THEM THINK WE ARE READY TO LEAVE.  Again .. .DO YOU UNDERSTAND??"


"Tomorrow is HAPPY SUNSHINE DAY!!!!"

As I walk around her room.  And pack up all her s***.  Packing.  Folding up.  Preparing for our departure. Making a statement.  SEE?  We are getting ready to leave.  SEE?

"well.. do I have a choice?"

"NOOOO!"

We have goals now.  We are bustin' out of this joint.  Whether they like it or not.

Oh and great news .. YOU MIGHT GO HOME TOMORROW.

Day #8

Happy Sunshine Day.  

I walk in ... all determined.  Pull up the blinds.  Look outside.  It was going to be 60 degrees that day.  Gorgeous out.  Then I realize something.  Just hit me.  The sun doesn't hit the room .. in the morning .. or the afternoon.  Awesome.  Just awesome.  So I turn on all the lights instead.  Artificial Happy Sunshine Day it is.

When are we leaving dr?  Huh?  Huh?  Maybe TODAY?  AWESOME?  Do we have to take the pic line home?  Huh?  Can she try to eat here before we go?  Maybe we can prove that she doesn't need to come home with that thing in her arm.  Please?  Oh .. that's actually possible?  Oh .. she has to prove she can swallow a pill?  Oh ... NO PROBLEM.

Next dr.  NO?  She HAS to go home with the pic?  Why?  The OTHER dr said maybe we don't have to.  Can you please get the other dr that is now my favorite dr. back in here?  Because now I don't like you.

Oh .. maybe tomorrow we go home?  Not today?  Oh.  maybe today?  Oh.  maybe tomorrow?

She swallows a pill.

 Thank you Apple .. for making our stay a little more comfortable.  

 (Side note ... I had to leave the hospital early this day .. because Jackson and Eli were locked outside the house.  I rush home.  Get in the house.  Realize something is different.  Look around.  First thing I notice was the crock pot plugged in.  That wasn't mine.  And there were no dishes where there were dishes in the sink before I left.  Look around more.  Beds are made.  Floors are clean.  More dinners in the fridge.  Flowers on table.  Gift bag left for Hayley.  I leaked.  I had refused help.  And my friends forced help on me.  I would have NEVER accepted this and didn't know just how badly I needed it ... until I looked around.  Grateful doesn't even come close to the emotion I felt.  I have great friends.  Those actions spoke volumes to me.  My heart is full of love for these girls.... overflowing.... )


Day #9

OH WE GET TO GO HOME TODAY???!!!  Oh... maybe today.  But maybe tomorrow?  You want to watch her swallow the pill?

Nurse walks in "okay Hayley .. let's get these two pills down"

Hayley "yeah .. pretty much I'll take them when I want to take them .. and I don't really feel like taking them right now.  I'm tired.  Can you leave?  Nope .. I'm not taking them RIGHT now.  Didn't I just tell you that?"

Bury my head.  In my hands.  She is not my kid.  I didn't teach her to act like this.  Please stop making me look bad Hayley.  She's OBVIOUSLY feeling better.  Cause she's on my every last nerve.

Nurse leaves.  "Seriously mom .. just leave me alone.  I mean .. you make my life hard."

I inch closer to her.  My hands millimeters from her neck.  Imagining gripping.  Tighter.  I leave the room.  Go to nurses station.  "I think you need to hook Hayley back up to the heart monitor.  Probably".  Concerned looks .. "why mom?"  ... "well .. because if I accidentally choke her .. it may take awhile for anyone to notice"

I go to the gym.  Before someone gets hurt.

I am met in the hall when I return.  By the insurance case worker .. and a nurse.  She explains to me that the insurance will pay for Hayley to go home.  With the pic .. and nutrients.  Okay.  Cool.  BUT insurance will NOT pay for a nurse to come with it.  So no worries .. we are gonna send a nurse to show you how to take care of her pic line.  Flush it... hook her up.  It's really quite simple Ms Wester.  Hey .. are you okay?  You seem out of breath.  I need you to sign here.  Can you sign here?  You can go home if you sign here.

I crawl back to Hayley's room.  Explain to her what just happened.  She starts HYSTERICALLY laughing. Hyena like.  I lay on the couch.  Hoping the blankets will swallow me.

As she's still laughing.

"It's okay mom.  When they show "YOU" how to do it .. then "I" will pay attention"

OH.  AND YOU MIGHT GO HOME TOMORROW.

Day #10

TOMORROW FINALLY CAME!!!!!

Bird's nest brushed ... make - up on ... 

The drive home ... it was so good to say goodbye to Sky Ridge ... I don't wanna have another extended stay.  Oh .. pretty sure Hayley doesn't either... 

HOME.  SWEET.  HOME.