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Mr kukukajoo is HOME!!!

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Posted 8/27/2014 3:47 AM (GMT 0)
Geez, just checked back in, so sorry this is getting worse by the day, still hoping and praying for the best outcome. You got to get some rest, as you have to work, and to keep a clear head with so very much going on.

Keep hoping for some miracle turnaround, at least a break in the heavy action, so that he can gain some strength (and weight), and so that you can re-energized, so that you have the strength and ability to work through it all.

David
Posted 8/27/2014 12:24 PM (GMT 0)
Good Morning. Paul is still in the ICU but just waiting for a bed to open up on the cardiac unit. Not sure what today has in store for him but he seems well and stable. The nausea and vomiting are pretty much gone now and things are slowing on the other end. Hoping he can finally be able to eat soon!

Not sure what today brings with specialists and tests, results from ones run, etc... All we know is his heart is too weak to pump sufficiently, he has lost tons of weight now, and he is very weakened from all of this. His kidney function is returning to normal, they are saying the small bowel obstruction is not as bad now, and he doesn't have clots in his legs (and hopefully nowhere else!). C Diff has been ruled out (thankfully), but infection still possible.

My worry is that an infection is affecting his heart, or that the chemo damaged it....

Would love to have him home this weekend for the 3 day weekend and can't wait to see him after I get out of work tonight.
Posted 8/27/2014 7:28 PM (GMT 0)
There are some positive signs here, kuku. Keeping it all crossed for your guy, as always.
Posted 8/28/2014 3:16 AM (GMT 0)
Paul is now on cardiac unit. Nightmare of an afternoon and now into the night the care is horrendous to say the least. This whole experience is turning me into a complainer, not willing to bend or settle for anything less than superior care, which seems to be severely lacking once again.

He was basically chained to his bed like a dog in ICU by a 2 foot IV cord and the monitoring leads which do have extensions available. He wasn't allowed to catheter all day and spent the entire day off and on the portable commode with it literally full of poop and trying to urinate and getting nothing but a trickle and never even coming close to emptying. he was in pain and begged the nurse to let him use the toilet just 5 feet away from his bedside. When I got out of work the nurse had come in and she slammed the door on him and left with him begging to be able to cath- his supplies from home on the sink just out of reach. LAST STRAW...

The care hasn't gotten better tonight, has gotten continually worse and worse.... I have tried to speak with the house supervisor but was denied. I will be calling the DON tomorrow and probably the CEOs office as well.

His condition? He is stable I suppose-- but his ejection fraction of his heart is 35% which puts him at high risk of sudden cardiac death... His kidneys are okay.... He ate some ice cream today.... he still can't tolerate much and only on soft diet.
Posted 8/28/2014 3:19 AM (GMT 0)
My company has me working in Manhattan for a couple of weeks and I am doing the tourist thing in the evenings. This evening I found myself in St Patrick's Cathedral and I lit two candles, one for Chrissy and Paul and one for the rest of those on this thread who know from first hand experience what Chrissy is going through. I'm not Catholic, nor churched, nor religious, but what's it gonna hurt? And, besides, when in Rome...
Posted 8/28/2014 3:27 AM (GMT 0)
PDA,

Candles are lighted with the spirit of your heart. I was once told that a candle lit without that won't burn.

I'm not Catholic, but lived for many years in the midst of that faith. I'll find a candle to light for all of you when I'm out tomorrow.

Chrissy (and JNF as a surrogate) - I have a vial of water from Lourdes. I'll share, in reality or spirit.
Posted 8/28/2014 3:33 AM (GMT 0)
Chrissy,

Why don't they have the poor guy on a proper catheter in the first place??? He sure shouldn't be attempting to self cath (if I understood correctly), he doesn't need the extra pressure of that effort, and they sure shouldn't let him suffer from bladder pains or spasms related from a partially full bladder. That doesn't make any sense in his delicate and frail condition.

Does sound like you need to kicks some a** tomorrow, and get the Admistrator involved if needed. They are suppose to be properly caring for him, not you having to tell them what they need to be doing.

Made me angry just reading your latest update. As the norm, you have my daily prayers for the two of you going all the time, and will continue to do so. Next time at Mass, will light special candles for both.

David
Posted 8/28/2014 4:07 AM (GMT 0)
Wouldn't it be nice to get a Teddy Bear Nanny Cam for Paul's room to see what his nurses are really doing and show it to the DON and Hospital Administrator? I know they're expensive, but it's nice to dream of justice. I have a friend who is a Nursing Home administrator. He installs webcams everywhere and does surprise inspections in the middle of the night when the night shift doesn't expect him. In some facilities, he's had to replace the entire staff when the culture got too toxic. I hope you get him some humane care.

- Allen
Posted 8/29/2014 11:35 AM (GMT 0)
Well this has been an ordeal and absolute nightmare for sure. Paul is probably coming home today and it's the first time I think he may be ready and won't be readmitted.

I still have to deal with the insurance side of things but the priority is getting Paul stronger and that wound fully healed and no more infections.

We're in for a 3 day weekend so let's hope it brings rest, peacefulness and our anxieties will melt away.

The problems we've faced through all this will be addressed soon enough and I pray the end result is it never happens to anyone else.

I feel it's all changed me some and made me fearful if healthcare and not having control. I hope I can get over this soon.
Posted 8/29/2014 3:26 PM (GMT 0)

kukukajoo said...


I feel it's all changed me some and made me fearful if healthcare and not having control. I hope I can get over this soon.

Thanks for the update and glad that he is going home.
As someone who has gone through a similar situation, you won't soon get over this feeling of being out of control. Is it life altering. You realize that bad things don't happen just to other people, that being healthy and doing all the right things doesn't mean #$%^,and all that power of positive thinking and a gospel of name it and claim it just got it quite wrong.
But it will get easier. Never the same, but livable. When we are used to being in control and being able to handle anything, it's a difficult hurdle to get over.
Best and hugs
Posted 8/29/2014 6:44 PM (GMT 0)
kukukajoo......
Glad to hear that "maybe" all will be better soon. Home might help so much more than words can say...it's the "comfort zone".
I understand your frustration wit hospital staffing and "work ethic", it has changed so much over the years, that is why so many "real" nurses are leaving and do more of the administration work for insurance and home health agencies than ever before, they themselves, are "burnt out" and tired of fighting the manner in how the health care industry has changed, for the worse.
I saw that first hand at Vanderbilt, the lack of involvement and "not my job" attitude.
Take care and we will hope and pray that this 3 day week end will be rewarding and Paul will start to progress.
Ted (husband) had his first Xofigo injection yesterday and he said this morning said that his pain has somewhat lessened, which is great to hear. He is agitated with me and my cautiousness with the instructions given to us. I am somewhat "over the top" when given instructions and follow them to the max or worse.
He has lost another 3 pounds since 08/20/2014, (down to 232) and he again gets angry with me (he says badgering him) when I try to get him to eat something or drink another Ensure. Oh well....I can't win for constantly losing.....
As always......I send you Peace Love and Hope
Posted 8/29/2014 8:38 PM (GMT 0)
I've been following this thread closely. How FRUSTRATING!

I wish I could offer you some suggestions.

The take away from all this is something I learned when my father was very ill and in the hospital. YOU HAVE TO HAVE AN ADVOCATE. His wife was a retired nurse and thank goodness she was with him every step of the way.

My Dad was getting violent and having hallucinations. His wife knew it was actually the SE of the medications they were giving him to calm him down (ativan? and other stuff). All they would do was medicate him, make him a zombie temporarily, and then more violent behavior from him. Finally she put her foot down (with the help of the Administrator). 48 hours later, my dead was his same old intelligent gentle self.

When my mother-in-law was in the hospital, she was scheduled for some GI tests. But they brought in a full meal and insisted she eat it. Fortunately, my wife and sister finally prevailed. She was supposed to eat nothing. If they had not intervened, the bowel prep would have been for naught.

Hopefully, my wife and I can be advocates for each other, as needed.

Mel
Posted 8/29/2014 11:50 PM (GMT 0)
I traded several messages with Kristi today and Paul is greatly improved. She was taking him home this evening and is confident they will have a relaxed restful weekend.
Posted 8/29/2014 11:53 PM (GMT 0)
That is VERY good news JNF!
Posted 8/30/2014 12:54 AM (GMT 0)
He's home! ! There is a God!
Posted 8/30/2014 1:19 AM (GMT 0)
Kristi,

I am so happy for you both.
Let's hope things slowly get better.

An
Posted 8/30/2014 3:12 AM (GMT 0)
Sal, I think Paul thinks I am much of a pest at times too.... But given he has no clue his medication names or anything then I think I am safe.... Besides he is way too weak now to put up a fight, I would win hahaha!! He told my daughter tonight I wouldn't have to even wait until he was sleeping anymore lol! That's also what paul weighs now I think (he is 6'7")- he gained 10 back in hospital with hydration and eating a LOT compared to before! Interestingly even though he looks like he just left Auswitch the BMI index is saying he is still overweight!

Jack, I can't tell you how much your kindness and support has meant and will always mean. I never felt alone because of you and so many others.

Mrs Worry- we need to catch up soon and finally talk about other things than me thinking I will find Paul dead on the sofa, etc! I don't know what I would have done without our late night chats and texts. You're definitely my sister from another mister!

Peter-those candles helped!

Allen- Thank you for continuing to be here for us. You helped us right from jumpstreet and haven't waivered since.

Moonlit, Dave, and everyone else- OMG I just realized that if I try to name everyone I owe huge thanks to I would be here all night and I want to sleep, its very late and we just realized they forgot two of Pauls medications- the ones for his heart- so I have to get to a pharmacy a ways away before they close at noon tomorrow or pay a small fortune retail for it.
Posted 8/30/2014 4:10 AM (GMT 0)
One of the insane things about the BMI calculation is how it always seems to say big men are fat.

Glad he's home and doing better.
Posted 8/30/2014 4:52 AM (GMT 0)
I agree, the standard BMI guidelines are a complete joke, even as described by the CDC. It doesn't compensate for age, nor sex, nor bone structure, etc. Strictly height vs. weight. Period.

Even when in my weight loss battle was at it worse, when I was looking emaciated to everyone around me, it still showed me being "overweight". Now, I have lost so much, 136 as of this morning, I am now showing up as having perfect BMI for my height. The charts wouldn't even consider me underweight until I go below 128 lbs. Which is absurd.

My ribs are all poking through, my shoulder blades feel like the edge of a knife, yet, according to the BMI game, I am ok.

David
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