Thread: Our friend Steve

Today was a two steps forward one step back day.

Joan started her dialysis this morning and she has another session this afternoon.

She didn't open her eyes today but she held my hand and squeezed, the nurses say its just random movement, what they call localization but they decided to agree that she knew i was there after a suitable and very loud conversation.

Maybe later today or tomorrow they say they will take her off the ventilator because they say she is breathing on her own and the vent is turned very low just for support if she needs it. I am not to HP but what can i do.
if she breathes on her own excellent but if she doesn't they have two options, put her back on or tracheotomy
I don't want the trach because she couldn't talk but their argument is that she probably can't anyway and it may be temporary, when she can breathe and cough herself they can remove it, she wont be pleased with the scar though, she is a woman and you know how that is likely to go over.

I made it absolutely crystal clear that now she opened her eyes and looked straight at me (I don't sodding care that they don't believe me), I will take her home in whatever condition she finally achieves.

I will buy a hospital bed for the bedroom and i will have a nurse in every day and i will put a TV in the room, I will cook, clean and dedicate my life to her care if necessary.

They will never ever end her, she is not being put down like damn dog.

She gave me 20 years and I will give her the rest of my life if she needs it.

Anyway, she will be waking up properly, i just shaved with Candy Cane for her because its December.

The advantage to the trach they said is that if she doesn't improve and I choose to take care of her instead of facility, the trach would be necessary because obviously I cant have a ventilator at home.

Letting her go was off the table the minute she opened her eyes. Thank god they cant make those decisions without my consent.

We are talking months down the road before she leaves the hospital anyway and I'm sure she will be awake enough to complain that I need a haircut, I gonna make she has some thing to tell me off for, it will be the happiest day off my life.

Prepare yourself, buddy. They get plenty cranky, once home. I've dealt with a couple of um. Had to put my foot in my own pops ass, set him straight. Just as he did to us. I even had to do his dialysis, too.

It was taxing..but I'd go thru it all again , for a few more moments with him. I've fought off the grim reaper three times, now. So I'm on borrowed time, myself. Living day by day to the fullest,for as long as this ol body will let me.

Hang in there. Life's a journey...not a destination.

Yes, you are well advised to brace yourself. We intended to keep my mother at home. I found out quickly that it was more task than we were up to. Her issue was dementia not total care but the emphasis is on the word care which she needed a lot of. My brother and his wife did keep her at home until she died in September this year. I honestly don't know how.

On the other hand, doctors don't know everything. My niece was in a devastating car accident. She died and was resuscitated three times during her initial surgery. Doctors told her she would never walk again. My sister in law who is a nurse practitioner took his dumb ass into the hall and read him the riot act. Through a ton of therapy and a tremendous amount of hard work she proved them wrong. First it was with a walker, then the arm canes to a single cane. Now she can walk without them. Still, she will never be the same so realism is key but the point is she had hope. Where there is hope there is a chance. Where there is a chance there is a way. Keep your spirits up my friend. You're going to need them up. But also don't let go of hope.

I have just got home from the hospital.

Joan was about to have her dialysis.

Today she opened her eyes again, she looked at me and she squeezed my hand, I saw it, I believe it, I was ready to have another world class argument with them when they tried to tell me i was seeing things because i want them so much but the nurse yes she looked at me this morning she focused and saw me. Not for very long but it was real.

I was so happy i almost kissed her but I remembered just in time that I'm old and Joan was watching or hearing so i didn't.

I was so happy someone else saw too.

They have warned me that its not impossible that she wont improve but the nurse looked through the notes and told me quietly that she being doing this for a long time and seen hundreds of stroke patients as bad or worse and its incredible how some come back.

Her CT was worse 2 days ago than the previous one just after she was admitted but the nurse said not to read too much into it as its like when you bang yourself, the first day is a red mark the 3rd day it looks so much worse with a big ugly bruise.

she will get another CT today or tomorrow and their hope is that it shows an improvement or at least no worse. She has a clot they cant remove a brain bleed that they hope will have stopped and her brain swelled from the bleeding, she also has damage from the bleed and the clot and the stroke, its a question of how much.

They decided not to try and remove the ventilator until she is more awake in case she has breathing problems or starts to choke, which I agree with completely.

She has so many ports for IV's, a central line thing, a bit like my picc but its much bigger and in her neck, she has a port for her dialysis and other ones that i forgot to ask about. i took a picture of her so she can look back whens she's OK gain, the nurse got all out of her pram because apparently no one can take photo's.

Anyway, that's today's news.

I know she has a long road to hoe and there's no promises but I'm starting to feel a bit like me, for a while there I was in a right mess. Thanks for the support guys, keep the good thought up for Joan, I'm convinced their helping her.

If this isn't true love, then I don't know what is! I can only hope that when the time comes, I'll have your courage and passion.

Godspeed Steve!

Originally Posted by Johntoad57

If this isn't true love, then I don't know what is! I can only hope that when the time comes, I'll have your courage and passion.

Godspeed Steve!

I hope on everything that's holy the time never comes when you have to through this, i would give my right arm and both nuts if she would tell me she wanted a cup of tea tomorrow when i arrive but i know there is no chance, YET.

I just got back.
Joan wouldn't open her eyes today but we could tell when she woke up by the breathing rate on her beepy thing, that shows her blood pressure and O2 etc.

She held my hand again and when i put my hand on the side of her face she turned and sort of snuggled into it.

She had her ct scan but typical of the neuoro types that think there to important to talk to us mere mortals he read it and walked away without seeing her or talking to me.

The nurse said his report will be in the notes tomorrow so here's another day of waiting to see if the most important person in my life has improved.

I went to bed at 11pm last night and i was exhausted so i fell asleep, i set my alarm for 5am so I'm ready to go at 8:30.

I got up and brushed my teeth, washed. I was exhausted, that's when i looked at my watch, 1:15.

Something has to give, I'm averaging 2 hours sleep.

I don't care, if she wakes up and talks or even just shows me she knows I'm there I will sleep then, for hours.

I don't eat hardy but the bright side if there is one is that I have lost so much weight since 25 November that my jeans are almost falling down, i can afford to lose a bit so I'm definitely not upset about that.

Interestingly, i haven't been for a week, that's OK too because i don't like getting that cheap toilet paper, and the comfy bum is expensive, i spend most of my money on gas, it an hour to the hospital each way and i go every single day, I going to do that for as long as she needs me to.

Interestingly, i haven't been for a week, that's OK too because i don't like getting that cheap toilet paper, and the comfy bum is expensive, i spend most of my money on gas, it an hour to the hospital each way and i go every single day, I going to do that for as long as she needs me to.

Get some baby wipes (Equate, 80 wipes/package, less than $2 at Walmart) -- cheap enough that you can spring for two. You'll be glad you did.

Wow this is heavy. I haven't been checking the boards much lately so I am just now reading this thread. I am really glad you are seeing some light at the end of the tunnel and it does sound like some degree of recovery is very probable. Any progress she makes is probably because she doesn't want to leave you all alone. Right now you are the light that is holding her here. So do take care of yourself, Steve. You MUST budget some sleep time and use it for sleeping. You need to eat, too. Even a protein bar and a coffee is better than nothing, It will restore and energize you. What good are you to her if you nod off on the drive to the hospital and run off the road, or worse? Take care of yourself Steve, because she needs you as much as she needs all those doctors and nurses and stuff. She is counting on you so keep yourself together. Don't run yourself into the ground. Sorry if I am preaching too much.

Originally Posted by JBHoren

Get some baby wipes (Equate, 80 wipes/package, less than $2 at Walmart) -- cheap enough that you can spring for two. You'll be glad you did.

Just don't try to flush them down the toilet.....

At my work we spend thosands a month cleaning them out and much more for the damage of overflows!