Encapsulating Peritoneal Sclerosis (EPS) / I'll tell ya - Posts with Polls / Kidney Failure / Till death do us part - We're Married

Balance between Husband and Children

The kids will win 99.9% of the time.  But, it breaks my heart to do it.

Franklin woke me at 5am.  “Babe, I’m in pain”.  Oh no.  It was his day off of doing dialysis treatment (he gets two days off a week because his job is keeping himself alive with proper treatment).  I call the ambulance and the roller coaster ride begins.

I leave the kids with my parents for 5-hrs.  Then leave them with their Godmother for another 5-hrs.  Franklin is at Emerg at the hospital up here for 15-hrs before they transfer him to the proper hospital.  They have blinders on as soon as they hear dialysis.  “We do not provide treatment for that here”.  No $h!t Sherlock!  Treat the issue while you make arrangements to get him dialysis at the right hospital.  Instead, it takes 8- hrs to finally get the go-ahead to transfer him to the right hospital, all the while only taking 1 x-ray and keep him pumped with narcotics for the pain.  It takes another 7-hrs to finally transfer him.  Note:  Since it took so long, the dialysis treatment centre at the hospital is closed for the night and he will now be 2-days without treatment.  Toxins, liquid level, and blood pressure  is on the rise.  His face, belly, and hands are already puffy.

I  have been popping in and out a couple of times to feed my 5-month old and to transfer him between caretakers.  He’s not taking to the bottled breast milk that I’ve pumped which isn’t much since I haven’t pumped on the regular since the first month when I wanted Franklin to try to do some feedings.  I keep telling myself to keep an emergency supply in the freezer.  sigh.  When I finally pick up the kids, both my loving ad indispensable go-to offer to take care of my toddler tomorrow if I need a break.  My poor baby was crying a lot and very loudly with both of them.

I need to be there for m husband.  To speak for him since he is on morphine every two hours.  To rub his back with my reassuring touch.  To feed him ice chips since he can’t have food, hasn’t had food in a couple of days, and he drank half a bottle of iced tea in one long gulp he was so thirsty.

But, how can I be there for him?  Bring my 5-month old to spend hours at the hospital?  Every instinct says (and everyone else also) it is not a good idea to do that.  I agree.  Especially when I was with him at Emergency and saw 3 rooms where anyone entering the room had to put on a mask, gown, and gloves to enter.  Even the food server!  What kind of airborne stuff do they have?!  As a healthy adult, I might be o.k. but, I just cannot risk that with my baby.   Or can I?

I am torn.  It physically hurts to think of my husband drugged up at the hospital on his own.  But, I just can’t bring the baby down there.  Baby wins.  But, really, there are no winners here.  We all pay the price of this horrible kidney failure.

I am afraid.  My uncle passed away several months ago very quickly (1 week!) when he went to the hospital.  He also had kidney disease.  Franklin has been in hospital many times, but this time with new baby, uncle’s recent death, and my 5am wake ups (with no naps during the day) for the last few weeks, I broke down and cried a bit.  Sobbed actually.  Red rimmed eyeballs, puffy lids, snot drippings, just a plain mess.

I’ve been sticking my head in the ground and refuse to acknowledge the death sentence we are living.  Without dialysis he will die.  It is slowly killing him too.  The very thing that is saving him is killing him.   I live in my bubble and pretend he will be here forever and we will share our golden years exploring the next chapter in our lives.  It’s the only way I know how to survive each day for the last 10+ years.   But, right now with him in the hospital alone feels too bright and harsh.  Too real.  I want him home and I want to stick my head in the sand again.  Ignorance is bliss.

Do I tell his mother?  He says no.  She will be upset.  If I tell, he gets mad.  If I don’t tell she gets mad.  This is not the first time I haven’t told her of his hospital stay.  I know as a mother I would want to know.  But, what do I do as a wife?

I hate incompetent, cold-hearted medical “professionals”, bureaucracy,  shortage of beds in hospitals, and most of all Kidney Disease.

This sucks.

See the next day in Balance Act II



11 thoughts on “Balance between Husband and Children

  1. Eleisa, my heart goes out to you as I am sitting here in tears…. You are a wonderful, wife and mother… your strength and courage is undeniable… I wish I had more to offer but what I can offer is a shoulder to cry on, and sympathetic ear and huge arms to wrap around you to allow you to just to release all of those emotions you’ve been holding in for 10+ years… you are a pillar of strength and this too you will get thru with the love and support of everyone around you….

    My thoughts are with you and Frankie and also with your two gorgeous boys….

    With much love

    • oh jilly. thank you so very much for your kind words and love. i just might take you up on your offer one day. hugs are one of the best medicines there are. Frankie has improved. the surgery they once suggested to correct the issue would make every day a living hell. so having to go through this every few months seems to be the lessor of two evils so far. although, when going through it, i’m not so sure sometimes. thank god i have my family. without them i think i would truly break down.

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  3. Mike has been telling me to read your blog for awhile now, but to have Kleenex. Boy was he right! You’re writing has such soul and depth.

    I understand your delima, in a much smaller way. I’ve been the person who stayed in a hospital downtown for a week all by myself. It was awful. An experience I would never wish on anyone. But it made sense. Mike could take care of Travis and save his vacation time for when I came home. I didn’t want Travis exposed to the germs there. The sickest I’ve ever been was a virus I picked up during my first stay at the hospital.

    I second all Jill had to say. You are amazing! Franklin is lucky to have you.

    • Oh Heidi. Thank you so much for reading, your kind words, and for sharing. To me there is no “smaller way”. It just as difficult. You are a strong woman to be there on your own, but so much more for also recognizing what would ‘make sense’. Putting your loneliness and struggles in the hospital aside for the greater good of your family. So selfless of you. You are amazing.

      Maybe there’s a poker game at your old place before you move? We’ll come so the boys can all hang and I can give you a hug hello 🙂

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