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

Hello, Hell…We Meet Again

The roller coaster ride reached a peak we haven’t been before in several years.  Talk of surgery.  Scary.  Every day was up and down.  Things come up that I had to still take care of outside of The Husband.  Here’s the past 6 days in one post:

The Summary:

  • Day 1 – It Starts
  • Day 2 – Things come up (life’s responsibilities)
  • Day 3 – More Progress or they will cut him open tonight
  • Day 4 – He farts!  Start him on clear fluids
  • Day 5 – Start him on solids
  • Day 6 – Comes home!  Not 100%, but better

Day 1 – It Starts

  • 5:30 am – Rude awakening
    • He’d been walking around all night, due to pain
    • I try rubbing his belly and comforting him
  • 6:30 am – I say let’s go down
    • He wants to wait, it’s not too bad yet, maybe it will pass
    • Traffic will just get worse, I say
    • I prepare kids’ snacks & lunches
  • 8 am –  He says let’s go down
    • I call the kids’ Godmother for help to feed them breakfast and take them to camp
    • I get kids ready, backpacks, lunch bags, etc.
    • We drive through rush hour traffic with him in pain and throwing up into a bag
  • 9 am ish to 9 pm ish – Emergency
    • pain
    • ng tube
    • morphine/hydromorphone
    • dialysis in emergency room
    • CT scan
    • X-ray
    • admitted
    • work email setup


Day 2 – Things come up

I had everything planned.  I’ll drive kids, go see hubby, and already have kids’ after care arranged. NOPE!

  • 8 am – wake up call
    • A technician must come do testing on the Dialysis system before hubby gets home
    • I call Hubby to advise of the delay and he lets me know that it’s our turn to provide snacks at one of the kids’ activity today and we do not have any snacks in the house to give
    • drive kids, go buy snacks, meet technician, engage niece to help with snack prep & distribution, work stuff – webinar, emails, law student stuff, update after child care support
  • 3 pm to 9 ish – hospital and a ‘break’
    • Hubby still in pain
    • hydromorphone
    • ng tube
    • no food or liquids
    • work emails, calls, etc.
  • 9 ish – kids
    • teeth
    • bath
    • cuddles
    • bed

Day 3 – More Progress or they will cut him open tonight

Planned on taking kids, work from home in the morning, then go down to see him.  NOPE!  I get a text from him that said “the doctors have come by and said if I don’t fart today then they will cut me open”

  • 8 am to 11:30 pm ish- Get to hospital and get contingency contacts and plans in order
    • after getting the text all plans of work go out the window and I will come down after dropping off kids
    • he’s still in pain, hydromorphone, nausea, etc
    • dialysis
    • call kids’ Godmother and we pray together on the phone
    • if he doesn’t at least pass gas then they will do surgery tonight
    • I call his mother
    • I text family and let them know what’s happening
    • a few small farts, but not alot and he’s still in pain
    • Ask cousin for help
      • help with kids to give dad a break
      • buy some groceries
      • bath kids and put them to bed
    • The Uncertainty
      • x-ray – I assume to assess how the blockage is
      • move to a different surgery floor – they say due to “overflow”, but the floor they move us to is also surgery, but specifically for thoracic surgery (the nurse indicates the body, i.e. chest and abdominal
      • after saying that surgery might happen that night, x-ray, and move, my mind is working in over drive and I think this surgery is happening.  the ‘overflow’ is an cover story by the nurse until the doctor will tell us what the results are
      • arrange childcare for next few days incase surgery happens, email work that I am still unavailable, pray
      • the nurse said if the doctors do not come by by 8:30 pm to have them paged to get results
      • by 9:30 pm when the doctors had not come by, we didn’t want to get him paged.  we just trusted that if they hadn’t come by yet, then we are not going to push surgery on the radar
    • Pray and cry in the car
    • Go home and pack for kids
    • Go to kids and pack snacks, empty back packs for wet towels, etc.
    • Try and sleep (toss and turn until 2 am, alarm goes off at 5:30 am)

Day 4 – He farts!  Start him on clear fluids

I go down early to be there for the 7am doctor walk arounds to find out what’s happening.  I get amazing news!  at 4:30 am he farts a storm and finally takes a sh!t.  Sounds gross, but it is music to my ears.  That means the obstruction is resolving it self…hopefully.

  • 5:30 am ish – 11:30 pm ish
    • I get up wicked early, tired but not tired
    • cry and pray in the car while I drive down
    • Franklin says he’s been farting up a storm and pooped water since 4:30 am
    • PRAISE GOD! in the 11th hour, the Lord has heard all our prayers
    • they will start him on clear fluids.  he doesn’t take in too much
      • 2 jello cups
      • 1/2 cup beef broth
      • 1 cup water
    • he hasn’t eaten in 4 days and he needs to take it easy
    • he’s shitting water and farting all day, which is great, but by late afternoon he is is weak and not feeling well.  I fear he is dehydrated.  His blood pressure is rising
    • go to our family dinner night for a plate of food and have arranged that one brother will take kids for the weekend
    • kids cry they want to come home with me, so other brother says that he can watch them tomorrow and to let kids go home with me
    • run disinfect on dialysis machine

Day 5 – Start him on solids

I tell husband I will come down after I feed children.  Ask dad to make hubby congee. Hubby must be feeling better because he says I can just stay home and rest.

  • 8:30 am to 10 pm – finally I get to take a nap, start him on solids
    • Cousin text with offers of breakfast, but since I have the kids I ask if she can make from scratch waffles for kids also
    • breakfast and movie at cousin’s house, young one is hangry
    • both are fighting about space on the couch
    • we go home – put on movie while i take a nap
      • interrupted nap: get phone call, texts, kids waking me up asking if they can download a game, etc.
    • bring kids down to family’s care
    • hubby texts “i have a salad and tuna salad sandwhich for lunch.  i’m so excited”
      • I have tears of laughter, relief, and love
    • go to hospital – walk around, sit in t.v. room on that floor
    • dialysis
    • Hubby comes with me to move my car.  He gets car sick and gets out of car and dry retches.  He waves me off to go park up.  I park and scramble to find him
    • get him back into bed and he sleeps
    • dinner of mashed potatoes, steamed carrots and a slice of turkey with gravy
      • eats it. has pain.  i’m worried
    • he sleeps
    • go get kids at brothers house
    • other brother has come to get kids for the night – w00t!

Day 6 – Comes home!  Not 100%, but better

He’s dizzy in the car and crabby AF – I’m driving too jerky.  Why am I in this lane?  Don’t take this exit take the other exit off the highway.

  • He gets home and feels nauseous
  • Lies down in bed, but has the spins, stomach is ‘twinging’.  FAAAAK!
  • Takes a small crap
  • Feels nauseous
    • I ask if we should go back down
    • Make him a hot tea
  • Showers
  • Takes a nap
  • make him 2 boiled eggs
  • I go meet brothers for dinner and get kids
  • pass by my dads
  • go home and give hugs all around
  • bed time routine
    • teeth
    • bath
    • cuddles
    • bed

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