Encapsulating Peritoneal Sclerosis (EPS) / Kidney Failure / Till death do us part - We're Married

Again January2012

The days leading up to this point was already foreshadowed with pains, missed treatment due to the pain, and the fear I felt in my heart.  Then when he called out at 3AM for 2 extra strength Tylenol it was the calm before the storm.  The morning was filled with sharp pains.  Thank goodness I was working from home.  Funny how it worked out that way.  I was going to go into work and WFH tomorrow.   The boss thought it would be better if I came in tomorrow.  And thank God she did.

The Husband wanted to wait and see if he could ride through it like he did two days ago.  But, I could see it was getting worse.  We had to go.  I’m telling him we have to go now.  I will drop off the kids to my life-saving parents to watch, as I drive you downtown to the hospital that has dialysis treatment and the specialist you see at your clinic sessions.   You begrudgingly agree.  I am now on auto-pilot.

1.  Call parents and ask them to watch kids
2.  Get kids and husband dressed, coats, shoes, then car
3.  Drop off kids
4.  Road rage through traffic while my husband is now screaming and squirming in pain

I remember feeling nothing while I stared ahead on the highway.  Shoving my own fears so deep that it could not reach my tears.   I am focused to get him there quickly and to face the next of many hurdles.  I block out baby’s cry in my minds eye as he reaches for me to hold him as I dash out the door.

I pull into the drive way at Emerg and bring him in.  I know the drill.  I tell him to go sit down while I fill out the clip board for the triage nurse to hopefully call us next.  It is a packed house.  He tells me to go look for his hemo nurse.  She can’t do anything, but like a soldier I hear the order and act.  No thinking.  Just action.  I leave to jump into the van and drive over to the entrance she is closest.  I score a parking spot to boot.  Something has to go right, right?

I run to her office like a chicken with its head cut off looking for her.  I find her and the reality sets in.  She can’t do anything to help him and I need to get my head in the game.  I now run back through the hospital to head back to Emerg.  He is being wheeled in, finally.  But, the nurse was telling him that there are alot of sick people in the waiting room and they don’t want to hear you yelling.  WTF!?  I suck it up and instead of poppin’ off on the young dude, I just calmly explain that it’s because he’s in so much pain and answer all his questions so we can get him help.

Nope.  He just wheels him back out to the waiting room.  NEXT!  So with all eyes staring, I wheel him around just behind a wall.  He screaming in pain again.  He wants to lie down on the floor.  Disgusting, but that’s how bad it is.  I put down my coat for him to lie on.  I try my best to sooth him and to ‘keep it down’.  I don’t look anyone in the eyes as they stare.  Then a security guard comes over to say he can’t be yelling like that.  He’s in pain! He’s lying on the floor!  That’s how bad it is!! My nerves of steel are starting to bend.

They finally come get him and tell me to wait here to get him registered.  I sit down and start to crochet.  Numb.  On auto-pilot.  Then the older lady in the wheel chair says to her husband, “at least it’s quiet now”.  I break.  I sob quietly in my hands.  I can’t stop.  My shoulders shudder.  I can’t catch my breath.  Tears escape.  I feel their eyes on me.  I keep my hands to my face with my eyes squeezed shut to keep them out.  I want to be alone for a minute.  Where is a rock?

I finally get called up to register him.  I go to find him and happen upon him being wheeled from one room into another.  They have given him morphine.  He is a bit quieter as the drugs seep into his veins.  The same nurse says “who’s getting stuck with him”.  Now, I don’t know if he meant my husband, but the fact that he’s near the front entrance of our room and he’s looking in that direction while in the nurses station shoots another hole in my armour.

We wait.  I ask if we can get the tube put in to ease the immense pressure.  Can’t do that until the doctor sees him.

He finally gets the tube put in and the nurse is 90% sure it’s in.  She goes to secure it by taping, but the husband doesn’t want that.  She gives the disclaimer “it’s not my fault if it comes out” and then tapes it another way and again disclaims again “I respect your wishes”.  He’s a patient in pain on morphine!  Is he really supposed to be calling the shots regarding this!?

Why do I feel like I am pestering you nurses.  After yet another brush off of empty promises to get his meds, I go back to the room to a withering Franklin.  He is in pain.  He yells “Nurse! Nurse!”.  I don’t care if I am bothering you, my husband needs help.  I ask again.  Another nurse, one of whom had passed me while I stood at the door hoping to see our nurse and get help and gave me the empty promise of help, is there.  I ask again.  She holds up the report and says that he has received it already.  WTF?!  I rattle off each time he has received it and the last one was 90 mins ago.   We’re working on it, she says. And  I say he is screaming in pain.  He can keep screaming, we’re working on it.  I go back and try and distract Franklin by rubbing his feet.  The nurse comes in and says he can’t keep screaming out nurse.  That’s not going to make things faster.  What really makes my blood boil is that Franklin whimpers that it’s because he’s in so much pain.

He’s sleeping, which is good that he cannot feel pain, but as soon as he’s jarred awake he will be crying in pain again.  That same nurse who last gave him the morphine took his tube out.  She was supposed to try again to put it in.  She said she’ll go get the things she needs and will come back.  It’s been an hour.  She has not come back so far.

Franklin quietly calls out for me.  I am glad I can say I am here.  This must have reassured him because he went back to sleep.  He has gone for a CT scan and needed a top up right away.  While he was gone, his older-younger brother came.

Now, his youngest brother and his girlfriend have come.  This young man has had to endure many a hospital stay.  He doesn’t work right now (he’s in school) nor has young children.  With the process of elimination he will stay until Franklin gets admitted.  They have offered to keep the boys, but my kids are with my parents in the ‘burbs.  I am glad they are here, because I know my parents are tired from watching both baby and toddler all day and I must get them.  Yet, I am still here.  I do not want to leave.  I just want to cry.  Big sobs.

It is times like these that really put things in perspective.  Your health and family is the most important thing to me.  In all my years I had never worked with such a passive-aggressive, manipulative, b!7Ch before.  I complained, but then this comes along, and it reminded.  WHO CARES!  Work is work.  Who cares that we spent more money then we should have over the holidays?  I am lucky enough to be healthy and employed.  I will make it back.

Note to self:  Live life because today may be your last.


10 thoughts on “Again January2012

    • thank you very much cuz. much appreciated. we can use all the prayers we can get! :). you have grown up to be a beautiful adult. inside and out. you have been added to a small list of people i may call on one day. hopefully never. xoxo

  1. I will make sure to pray for you and your family, you are an amazingly strong woman and give alot of people reality checks as to whats important in life and to keep Family close to our hearts. Please send my prayers to Franklin.

    Jennifer Pasko and family

    • thank you very much jenn-jenn. i definitely couldn’t do it alone. my parents, nieces, my sons’ Godmother, my brother/sons’ Godfather, and his family have been there for me each step of the way. from baby sitting, to food, to listening, to taking turns going to the hospital,so my frankie won’t be there alone. even my boss! she allowed me to work from home during the re-coop time. i would have taken time off if i had to, but being able to earn money to pay for everything in life (mortgage, food, bills, etc) leaves me with one less stress on my already full plate. and old and new friends, with their words of encouragement help keep me focused and strong too. i appreciate your prayers. we’ll take all we can get! 🙂

  2. Pingback: Eleisa’s Body by Vi – Day 1 « eleisawifelife

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