Wednesday, December 16, 2009

This is why I cant sleep ( a novel)

No way did I think my Dad should have the CAGB surgery they plan. (Coronary Artery Bypass Graph) Too many risks for a man of his condition and history. Our main concern is DVT and post operative infection. Could you imagine if my Dad suffered through this major surgery only to pass shortly after because of a complication? The suffering he would go through in his last days post operative would eat us all alive. I dont want him to suffer anymore. I think the last 30 years has been enough. Slowly. One thing at a time has taken so much.

When my Dad was dx'd with Diabetes back in the 1980's the doctors assumed he was type 2 because of his age. He was placed on oral medication, and for nearly a year he suffered. Can you imagine? I honestly don't know how he didnt die. A few months later, he injured his finger at work (a "simple" bruise) It wasn't even an open wound.....but it became infected an gangrenous. After amputation surgery, they realized he was Type 1 and needed to start insulin.

The NPH days. Exchanges. No education. No internet. Just a "dietitian" and a primary doctor in a small town in rural Missouri. I remember my Dad being sick ALOT when I was little. I remember his lows and how shaky, pale and exhausted he would get. I remember him vomiting alot with frequent stomache pain. Dad always did what he needed to do to manage his Diabetes. He always ate right following the "exchange" rules. He always took his insulin. He worked in a factory and was always moving. Always going. Weekends were spent zooming around. Yard work, working on cars. Building anything and everything. Fixing anything in sight that needed repair. Many hospitalizations later and years past..... I can't recall which came first, the repeated surgical attempts to save his eyesight or the TIA. Whichever it was, once it all started to happen, it was like a snowball rolling downhill.

After the blindness took over, Dad had to leave work. Taking work from this active man is like taking the sun from the sky. I think sadness from disability played a big part in the downward spiral as well. Next came kidney failure. Dialysis many hours a day in the clinic was pure torture. It just couldnt continue that way. So my Dad did what he always does, and took the bull by the horns. He took classes to do his own Dialysis exchanges at home. To this day, 7 years later, my Dad is still doing his own Dialysis every 4-5 hours around the clock. And we think we are tired.

Dad has a catheter that is implanted into his abdomen for his Dialysis. That catheter has caused an infection nearly each year over the last 7 years. Each infection made him very, very sick. Diabetes isn't kind to infections. We are no stranger to hospitals in our family. Then, last year came Charcots foot and risk of amputation. Dads foot healed amazingly well. Now it is again broken per the xrays yesterday. Enough is enough. I could never express enough how hard this disabled life has been for my dad. If there is a complication, he has had it. Can you imagine how a Dialysis patient feels? Dialysis is life support, it is not a cure. Looking at my dads labwork each month I can only imagine how he feels every day. (and I wont mention how lonely he is with his kids all moved away and a wife that works 50+ hours a week) His labs are a mess. Dialysis does horrible, terrible things to your whole body.

I'm not saying we have given up. It seems we are stuck in a position where surgery is just as scary as no surgery. Which one will win? Today, I was all for surgery. I think if my Dad has a will, then he can fight this. Unfortunately, today he doesn't have a will. He wants to place his fate "in god's hands" and refuse surgery. I can't say I blame him, but today I felt differently than I had all week. I want him to have the surgery. He COULD be fine and recover beautifully. He could. He really could. Ultimately, it isnt up to me and I'm scared to death of whichever decision he makes. My mom, my sisters and I have sat all week beside Dad. Each of us emotionless. Feeling helpless and hopeless for which ever decision Dad chooses. This is a terrible place to be. I can only imagine how he feels. I hope he isnt basing his decision on my mom. I hope his decision is for him. I'm so torn. So heart broken. I dont even think my heart is beating at this point. I feel so empty and confused. I know this is the calm before the storm. If he refuses surgery I think I will have a total meltdown. If he proceeds with surgery, well, I will feel the same way filled with worry and what if's.

It is 1am and I should be sleeping. I just can't. I can't turn it off. All the what if's. Surgery or no surgery? I don't want my Dad to be persuaded either way. If only there were other options. If only my Dad never had this fucked up disease! I know he could have been so healthy in life! Diabetes didn't give him a chance.

I argued with the doctor today. I didn't mean to, but it all came out. All the frustration. All the hatred of how the hospital takes over my Dads insulin after he has been doing this for 30 years. Monday they stopped giving him his NPH. They were only giving Regular on a sliding scale for highs. (because he had one low) Of course then he was too high (250's) so they decided to start Lantus. My dad has never used Lantus. They have no idea what dose to start with. So now they are giving Lantus and regular for highs. And, now he isnt budging. After lunch he hit 320's so they gave him more regular. REGULAR!!?? This is 2009 people! Ever heard of Novolog!!?? At dinner he was 450. So they gave him more regular and dinner. DINNER. At 450 with just regular. WHAT IS COVERING FOR THE FRICKIN FOOD!!?? If they dosed regular based on a 450 blood sugar, then he ate, so that amount given was only for the 450 high and not for the food. So what the hell covers the food!!!??? I was freaking out. Never having used NPH or regular with Maddison HAD to understand what the hell they are doing. I talked to Mrs Wendy. :)

Wendy assured me they know what they are doing, though I still dont get it. But, if Wendy says so, I trust her 100%. My Dad is pissed off because they screw him up every time he goes into the hospital. Now he can't go home until they have his blood sugar "controlled." (infection is passing by the way) Can you imagine going into the hospital and handing Diabetes over? Well, they didnt give him a choice, and....he was too sick. Obviously he needed that insulin drip in the beginning, but now he should be able to take back his Diabetes care. They wont let him. They say, because his A1c was uncontrolled (8%) and they want him under 6%. All I could do was laugh, and thats what sparked my furry. Give the man back his Diabetes care. He is the expert. I was ready to fight. Only it didnt do any good. :(

So. I cant sleep. Maddison is hoovering around 118 on her CGM. This sensor hasn't been very accurate yet. I still have to re-check before I go to bed. Tomorrow is the last day of school until January 4th. I'm SO excited. All I want is a break from school stress. (thats another novel for another day) And a CURE would be pretty nice too.


Amy said...

Thanks for the update Kelly! I can't imagine what this must be like for you and I'm so sorry that you have to go through it. I'll continue to pray for your dad and mom. What a life he's lived and how HARD he's worked to live it!! He's given it his all!

Enjoy your kiddos....I'm ready for a break too!!

phonelady said...

Oh Kelly many prayers and hugs to you hunny bunny . You have alot on your plate right now and I hope all settles soon .

Hallie said...

Kelly.... I am so, so sorry you have to go through this. I know you are incredibly worried about your Dad and Maddison, and your family... Don't forget to take care if yourself. Sending you prayers and hugs.