Medical Emergencies and Multiple Hospitals

*apologies, this was written Thursday Morning but I’m just getting around to posting it. I will update more later*

Here I am again dear readers. Unfortunately, events like this seem to be the only time I’m able to find enough free time to write. I’m sitting here in the floor, back against the wall, in a hospital room listening to my father and my boyfriend snore.

Life is a complicated animal. Much has happened, as is the case for everyone. But over the last few weeks, it’s been crazy. My grandmother went in the hospital for not being able to breathe. It went from her having a goiter on her windpipe and artery to her also having a very aggressive form of thyroid cancer. While trying to get everything scheduled for her to start radiation at Emory, my mom has also been trying to take care of my father.

Renal failure, diabetes, eye issues, neuropathy (to the point of not being able to feel in his hands and feet), and balance issues are just a few of the lovely things my father faces every day. It’s a constant battle. But, it gets better. Yesterday morning while my mom was getting ready to take my father to dialysis, he fell and broke his ankle. Pretty severely. It was also my mom’s birthday. And her mother was in the hospital due to severe fluid retention that turned out to be a blood clot in her leg.

Today, they managed to get my grandmother released from our local hospital but only to take her to Emory in Atlanta to begin her first day of radiation treatment. My dad is supposed to have surgery on his ankle today. My poor mom can’t be in both places. So I took the day off work to come watch over my dad.

It’s so hard to see him like this. Restless, in pain, and a shadow of his formal self. But this is life. It happens to all of us who are here long enough. And I know he hates for me to see him like this. But I guess we all come to a point where we have to bite our pride and accept the help of those who love us, regardless of the situation. So, while my mom drives to Atl with her sister-in-law and my grandmother, I am sitting here doing research for the coming days after surgery.

Planning to add a ramp to the stairs at my parents’ house. Looking up trailer hitch receivers and cargo trays for my mom’s car to carry a wheel chair for my dad and/or my grandmother. Planning food prep menus to help my parents when they’re exhausted but still need to follow dad’s dietary restrictions.

So many things to do. So little time. The curse of my life.

In these situations, with a loved one who’s health is chronically failing, it’s difficult to explain. People always ask me how he’s doing. It’s hard to say, isn’t it? It’s not like chemo, there is no fight and then remission. The only thing that helps renal failure is a transplant. And what can you tell someone then? He’s hanging in there waiting for  someone with a good kidney and pancreas to pass so he can have them? That, by the way, is not something people want to hear. It’s the truth, but people do not want the truth. Not the whole, unaltered truth that makes them uncomfortable. So I tell people the truest thing I can. He’s still here.

And for now, that’s all that matters.


 

” ‘ Some people don’t understand the promises they’re making when they make them.’ I said. ‘Right, of course. But you keep the promise anyway. That’s what love is. Love is keeping the promise anyway.’ ” – John Green, The Fault In Our Stars

“He admired my melancholy madness and said that it was graceful and beautiful. But it was neither of those things. I was a hurricane at the centre of a collapsing, burning, building; and I wasn’t someone to be admired at all.”

“Even if you know what’s coming, you ‘re never prepared for how it feels.” – Natalie Standiford

“You wake up every night to fight the same demons that left you so tired the night before, and that, my love, is bravery.” – unknown

“Well it breaks my heart to see you this way, The beauty in life where’s it gone? And somebody told me you were doing ok, somehow I guess they were wrong.” Flogging Molly “Whistles the wind”

“Don’t ever think you’re alone here, We’ve just been trapped in different hells, and people aren’t against you dear, they’re just all for themselves.” – e.h.

“May we exist like the lotus, at ease in muddy water.” – Zen proverb

“Keep your chin up little stargazer, At worlds above your own, You are small but you are stardust, And that’s worth more than you’ve known, For every sun and solar flare, Is made up just like you, And if they’re cause for wonder Then I promise you are too. Look out little stargazer ‘Til nothing’s left unseen, And know there’s not a patch of sky Where no one else’s eyes have been, That the darkness that enfolds you Holds countless other starlit hearts, And with this you stand together Though you live lifetimes apart. Be brave now little stargazer The sky is growing light, And courage wanes like moonbeams When it’s pulled out from the night, But like those who gazed before you; Know when your heart is full of fear, That it is always in your darkness That the stars start to appear.” -e.h.

“we mature with the damage, not with the years.” – Mateus William

“Enjoy every sandwich” – Warren Zevon

“I abide my heart to know wisdom, and to know madness and folly. I perceived that this is also a chasing at the wind. For in much wisdom is much grief. And he that increaseth knowledge, increaseth sorrow.” – Assassin’s Creed

“Empedocles claims that, in utero, our backbone is one long solid; and that through the constriction of the womb and the punishment of birth, it must be snapped again and again and again to form our verterbrae; that for the child to have a spine, it’s back must first be broken.” – The Astonishing Life of Octavian Nothing: Traitor to the Nation M.T. Anderson

“She looks back out the window and as the light slides along her profile, I think I see sadness. And I wonder if she’s sad that I’m so weak and so afraid when she’s always been so strong.” – The Forest of Hands and Teeth

“If I leave you it doesn’t mean I love you any less.” – Warren Zevon “Keep me in your heart.”

“Promise me you will not spend so much time treading water and trying to keep your head above the waves that you forget, truly forget, how much you have always loved to swim.” – Tyler Knott Gregson

“Take the night and darken everything around me, Call the clouds, and listen closely, I’m lost without you. Call your name everyday, when I feel so helpless, I’m fallen down but I’ll rise above this.” – Seether “Rise above this”

“We live in grim times indeed if even children are too world weary to believe in magic.” – Fable

“Hardships often prepare ordinary people for an extraordinary destiny.” – C.S. Lewis

“She’s all laid up in bed with a broken heart, while I’m drinking Jack all alone in a local bar. And we don’t know how, how we got into this mad situation, only doing things out of frustration, trying to make it work but man these times are hard.” – The Script “For the First Time”

“Mama whispered softly, time will ease your pain. Life’s about changing, nothing ever stays the same.” – Patty Loveless

“Life asked Death, ‘Why do people love me but hate you?’ Death responded, ‘ Because you are a beautiful lie, and I am a painful truth.’ ”

“But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines, it will shine out all the clearer.” – Samwise Gamgee “LOTR: The Two Towers” – J.R.R. Tolkien

“These are hard times. The world hurts. We live in fear and forget to walk with hope. But hope has not forgotten you. So ask it to dinner. It’s probably hungry and would appreciate the invitation.” – Libba Bray “Going Bovine”

“It’s not hard to do. It’s just not easy yet.” – Monte  Selby

“Life is a grindstone, and whether it grinds a man down or polishes him up depends on the stuff he’s made of.” – J. Billings

” ‘Sometimes,’ he said while gripping the fabric of his own pant leg, “You run out of tears long before you run out of hurt.’ ” – Tyler Knott Gregson

“Listen to the musn’ts child, listen to the don’ts , listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me – anything can happen child, anything can be.” – Shel Silverstein

“I clutch my pillow to my chest and bury my face in it. I don’t cry. I just ache. Grief is not as heavy as guilt, but it takes more away from you.” – “Allegiant” Veronica Roth

“Needles and pins, needles and pins, sew me a sail, to catch me the wind. Sew me a sail, strong as a gale, carpenter bring out your, hammers and nails. Hammers and nails, hammers and nails, build me a boat, to go chasing the whales. Chasing the whales, sailing the blue, find me a captain, and sign me a crew. Captain and crew, captain and crew, take me oh take me, to anywhere new.” – Shel Silverstein

“She taught me all about real sacrifice. That it should be done from love… That it should be done from necessity, not without exhausting all other options. That it should be done for people who need your strength because they don’t have enough of their own.” – Veronica Roth Insurgent

“A nurse guy came in and told me I had to leave, that visitors weren’t allowed, and I asked if she was doing okay, and the guy said, “She’s still taking on water.” A desert blessing, an ocean curse. ” – John Green The Fault In Our Stars

“We all carry things inside us that no one else can see. They weigh us down like anchors, they drown us out at sea.” – Chelsea Smile Bring me the Horizion

 

Just An Update.

Well, it’s been a while, and life has gotten complicated…

Dad’s been doing ok on hemo dialysis as far as I know. At least, until about 3 weeks ago. He didn’t really have any nausea when he first started hemo, but it started kicking in intermittently after his sessions. About three weeks ago, it started being constant. He hasn’t really been able to eat anything due to it.

Yesterday, he had a minor eye surgery. A while back, he had an oil bubble put in his eye to help reattach his retina. The surgery yesterday was to remove it, because his retina has completely reattached. He wasn’t looking forward to it because he remembered waking up as they made the first incision in the first surgery. Yesterday was the same.

After he got home, he started getting really sick and throwing up uncontrollably. Because he hasn’t been able to keep much food down, he’s mostly dry heaving. My mom rushed him to our local ER (who won’t normally even speak to dialysis patients) and the doctors wouldn’t really listen when he tried to tell them this has been an ongoing problem for a few weeks. They told him that it was simply post-op anxiety. His oxygen level was also constantly fluctuating between 98 and 78. My mom said the machine beeped every time it dropped, and beeped so much that it finally shut itself off. No nurses ever came to check on it or him, which tells you something about the hospital in our town.

My mom called his regular dr who prescribed another anti-nausea med and an anti-anxiety med to help him sleep. After a few more episodes of dry heaving, he finally got to sleep last night. He had to be back at the eye dr this morning for a check up. They didn’t see anything wrong with his eye from the surgery. He was supposed to go to dialysis today as well, but was so sick that he didn’t go.

My mom received a phone call later in the day from a very concerned dialysis tech. Over the past two weeks, his hemoglobin levels have dropped from a 10.2 to 8.2. Now, anemia is very common for dialysis patients from what I understand. The kidneys produce a hormone called erythropoietin (EPO) which helps tell your bone marrow to make red blood cells. This helps keep you well oxygenated. He has been on a specialized Iron supplement since he started dialysis, as well as being given EPO shots as needed. Even with the EPO, his hemoglobin has dropped significantly over the last two weeks.

The tech wants my mom to take him to the hospital the next town over (where he’s spent much of his time, as well as had his surgeries done) and have blood tests ran immediately. I’m hoping that she will convince him to go in the morning and that they will be able to figure out what the problem is.  I’m hoping that his hemoglobin levels being low is the cause of his sudden severe nausea and the returned shortness of breath. It would also explain the drop in oxygen levels, I would think.

I have read that in addition to the EPO, a blood transfusion may be required. Unfortunately, he had to have two when they created his fistula. The problem with this is that his blood type is kind of rare. He is B-. Only 2% of the population is B-, according to the Red Cross. Not to mention, they told us last time that he has some rare antigens. They were also cautious about the blood they gave him because he is diabetic and on dialysis. I am very worried for the future…

On the plus side, Honey and I got approved to buy a house, so on top of all this, we are trying to look at houses after work. Too bad it starts getting dark about the time I get off work.

Be well, dear readers. May the new year bring you more joy than the previous.

We’re All Mad Here.

Pretty sure I’m fighting off some serious depression. I mean, things aren’t nearly as bad as they could be but I honestly think it’s a result of feeling like we are taking one step forward and three steps back. Good news of the day: Dad should be able to start using his fistula Monday. The graft seems to be working. The bad news: One of the incisions from the surgery to (put in, originally) take out his PD catheter seems to be getting infected again… So the Doc immediately prescribed him Bactrim. Again. Hopefully this time it works. The last thing he, or his spirit, needs right now is another hospital stay…

I just want to feel like we are actually moving forwards for once. No more back sliding, no side stepping, just forward momentum. I don’t even really care how slowly it goes, as long as it doesn’t go backwards. I just want him to genuinely feel better, my mom to not feel so stressed, and things to start smoothing out to what will become our new normal.

Right now though, this house is about as far from normal as it gets. My dad is on dialysis (and we are adjusting to Hemo from PD), he’s also diabetic, my mom is in denial and works swing shifts, my brother and his wife (now, long story) still live here (still following Mom’s rule of her sleeping in the spare room, him on the living room couch), and I still live here. It’s over crowded to say the least and personalities and such are clashing like you would not believe. All I want is a small piece of land and a tiny house. A sanctuary in the woods that Honey and I can call home, and a life that is my own. But these days, even that seems too much to ask for.

So, I am trying for now to have a new outlook on things. I am trying to let go of any anger or grudges, realizing that there is pain underneath. I have been trying to come to terms with the fact that while someone hurts us and it stays with us, they do not always realize that they wounded us as deeply as they did. So I am trying to forgive because really, forgiveness has more to do with me than them. It takes all my time and energy, especially if they don’t feel or know that they did anything wrong.

“Don’t feel bad if people only remember you when they need you. Feel privileged that you are like a candle that comes to their mind when there is darkness.”

“She needs to have a few drinks and cry a little – then she’ll be perfect.” – Tom Ford

“Expecting a trouble-free life because you are a good person is like expecting the bull not to charge you because you are a vegetarian.” – Jeffery R. Holland

“I’m not interested in competing with anyone. I hope we all make it.” – Erica Cook

“I have looked at you in millions of ways and I have loved you in each.”

“A lot of problems in the world would disappear if we talked to each other instead of talk about each other.”

“Show respect even to people who don’t deserve it; not as a reflection of their character, but as a reflection of yours.” – Dave Willis

“Hardships often prepare ordinary people for an extraordinary destiny.” – C.S. Lewis

“I wear this crown of thorns upon my liar’s chair, full of broken thoughts I cannot repair. Beneath the stains of time, the feelings disappear. You are someone else, I am still right here. What have I become, my sweetest friend? Everyone I know goes away in the end. And you could have it all, my empire of dirt. I will let you down, I will make you hurt.” – Hurt, Johnny Cash

“You take the breath right out of me, and left a hole where my heart should be.” – Breath  Breaking Benjamin

“Yeah, I could use a dream or a genie or a wish to go back to a time much simpler than this.” Airplanes,  B.O.B.

“She’s all laid up in bed with a broken heart, while I’m drinking Jack all alone in the local bar. And we don’t know how, how we got into this mad situation, only doing things out of frustration, trying to make it work but man these times are hard.” – For the First Time The Script

“Meet me out past the train tracks, I’m leaving and not coming back. You were right and I was wrong, this town will be the downfall of us all.” The Downfall of Us All A Day to Remember

“I abide my heart to know wisdom, and to know madness and folly. I perceive that this also was a chasing at the wind. For in much wisdom, is much grief. And he that increaseth knowledge, increaseth sorrow.” – Assassin’s Creed

“None of us find as much kindness in this life as we should.” Memoirs of a Geisha