(no subject)

[ravena_kade]

Dad is still in the hospital. Maybe home this weekend. The med that worked super on him and had all functions 100% normal (BP & Kidneys) is an intravenous med ...and can never be stopped. He would be house bound and hooked up. Most people last a year on it. Sigh. They are telling me he is a SUPER candidate for a heart pump. With the pump he could even go golfing and eat Chinese food... and especially DRIVE. The only thing he can't do is go swimming and go through metal detectors at the airport. If he needs medical procedures done she goes in with him to watch the pump. The reason a person is able to do everything is because a machine is pumping all your blood. The pump is unattached to the heart...a piece of the left ventricle is actually cored out. You have a drive line coming out of the torso forever. You wear a vest with batteries that last 17 hours. You sleep plugged in. You have no pulse...that creeps me out a bit. Frankenstein...Cyberman...zombie...take your pick. His body won't die unless another organ fails He cannot have this done unless he has a support person at least for the first 6 months. I thought it was just for keeping the wound/hole where the drive line enters clean. I have been told it is easier than changing an ostomy bag...and I helped do that once. EVERYTHING needs to be sterile or an infection goes to the heart. There is extensive training. It needs to be done at least twice a week. The only part that worries me is the training on how to clear errors on the computer that will be attached to him. The line is stitched into his body so it won't fall out, the external wires can have an issue and an alar will sound. WE will both need to be trained on that. Hell I am afraid to drive because I could hurt someone by doing the wrong thing or not reacting fast enough.... I am worried...but they show lots of people how to do this. He could die at my hand... but if I said no he dies... He isn't ready to go yet ... and people think he is 10 years younger than he is. The woman who heads the pump program said that she would be our new best friend forever. She does the training and is on call to talk to us 24/7. I said that she may regret that phrase and I showed her my hospital badge. She said that if I were to go on vacation Dad could go to the hospital and they have specialized nurses to change his dressings around the entry spot. It is a lot, but my main goals for the next 3 years was to learn this freaking job, clean up my bills. I hope he is stable to do the open heart surgery late January Early February. I can do the year end work stuff if it is January because he will be in my building and will be monitored... and as safe as he can be. Then I can take a month of FLMA or work from home. And my Sister is talking about FLMA too. If things go south I can access my 401k to keep the house until I can rent an apartment out. And I still need 3 root canals.... We shall see.

Comments

[fbhjr]

Wow. I’m sorry that so much is being dumped on you with this.

And, no matter what happens never think of his dying by your hand. You have done everything you can to keep him going. Yes, it’s possible something will go wrong. But, you will have done everything you can and have already do a massive amount.

[cmcmck]

This!

You have done way more than many people would think it reasonable to expect!

[chris_warrior]

i just SO VERY MUCH wish he'd wanted to get healthier enough to clean up his diet before it came to this. and i'm sending you love. whatever choice he makes, i'm wishing the best for YOU.

[ravena_kade]

I asked about the diet thing with the heart failure doc. She told me that compared to other patients I was doing really well with the monitoring and many people just go off the diet altogether. She said that when he come in he had no fluid so it wasn't salt and fats . The heart is just getting weaker.

[chris_warrior]

oh, hon. i meant WAY before this... like i'm trying to get my 70 year old brother to do, since he has valve leakage and knows it. there's not much you could have done for your dad given the extent of his congestive heart failure, diet or no. it's not on you. though i'm sorry his heart is getting weaker faster than they hoped.

[kaishin108]

The heart pump sounds like a good plan, if he can do it. Sending you good thoughts!

[brickhousewench]

You have a drive line coming out of the torso forever. You wear a vest with batteries that last 17 hours. You sleep plugged in.

That actually sounds pretty awful to me. What happens if the power goes out? We have plenty of noreasters and ice storms in New England.

[ravena_kade]

It is overwhelming

He will have 4 sets of batteries. Our house will be listed with the electric company, local ambulance services, police and fire department. If there are any electric outages my street is supposed to get first priority. We are also supposed to be able tp go to a hospital or fire department to just plug him in. I am told I can plug him into the car too.

During covid we did loose power for 5 days. My plan is to plug him in at my cousin's house or bring him back to the special unit and plug him in. I can also use a generator to power up the batteries.

A friend compared him to an Ironman . I would be happier if it were nuclear and he could fly.

[disneydream06]

{{{{{HUGS}}}}}

I am keeping prayers for you both.
HUGS, Jon

[malterre]

OMG I am sorry this is hitting all at once. I hope your Dad s a little more proactive in his self-care