Mr kukukajoo is HOME!!!

It breaks my heart to read this....
I wish you could convince him to go to the hospital.

Remember, with sepsis time matters. Once in septic shock, it may be impossible to reverse.

I would demand an answer from his doctor as to whether or not he/she thinks Paul's surgery has now rendered him terminal. If not, I would demand to know why they keep releasing him.

Thoughts, prayers, hugs, and love sent your way.

Today he has been in bed all day other than one trip to the bathroom. He still refuses to go to the ER, and wants to wait until the doctors appointment tomorrow. His temp is running normal, then low grade fever, and back and forth- mostly above 99.3.

He has lost 10 lbs total since Friday night.

I haven't checked his vitals nor his bowel sounds. Trying to be his wife. He understands what this is doing to him and doesn't want machines, more surgery, etc.

I feel like I am watching him slowly starve to death and wonder how long he can go on like this. He is so weak.

You know... Through this all I do remain hopeful and trying to be positive but realistic. Hence my posts on the intermittent therapy for ADT. He's sipping Gatorade/powerade now that's a bit watered down.

Still refusing to go to the docs/ER today. My youngest daughter said she knows I am respecting his wishes as otherwise I would have dragged him there before now! Although she (and I) wishes he would go, its his decision to make. He WILL be going tomorrow though.

Paul has lost over 20 lbs now this weekend alone. I'm pretty sure he has ' diff and maybe even pneumonia the way he is coughing. Ironically his wound is healing well.

He was up all night with diarrhea and I'm wondering if we need to bring a change of clothes with us to make it to the doctors office. Well good thing is its close to the hospital which i'm pretty certain they will admit him to.

Kristi,

Please only concentrate on Paul's immediate issue.......the gastrointestinal problems that are not resolved. Put the truck titles, estate, all such things out of your mind. They do not matter right now.

Also, I suggest the prostate cancer be put out of your mind for now. The initial treatment has had wonderfully quick and significant results and the PCa has been knocked down. It is not the current problem. The oncologist has to also understand this and I think should be in the background for now. The PCa will not cause problems this week or even in the next month. The intestinal situation is life threatening and should be the singular focus.

Most of all stay strong as a wife and professional practitioner for Paul's benefit. His strength will greatly depend on your strength. You are the most important person in his life and the main reason for fighting and living. Be the very best you can for him and free your mind and emotion of those things that are not either urgent or important right now. We are with you and Paul.

Jack

Kristi -

We've had a thread or two here lately about destiny, fate, whatever you want to call it, and the role it plays in our lives. The gist of the talk was whether each of us has a destiny to fulfill, or whether everything in our lives is just random.

Well, just a thought, but maybe all of your training and experience as a nurse up to this point was meant to be part of your destiny, to bring you to this point in Paul's life, so that, because of what you were, you could be especially helpful to him at this difficult time. And maybe all that training and experience is at some point going to make a critical difference in Paul's life.

You may have already helped him in ways that would not have been possible if you had not had the background you do. Perhaps that has been your destiny.

So perhaps you have the right to say to yourself "I really am making a big difference in his life."

Over the last several hours I have exchanged several messages with Kristi. They are at the doctors getting another CT scan as it appears there may be another blockage. They are waiting to see if he will be hospitalized for more treatment. They certainly need the power of our support and prayers.

Thanks,

Jack

I have been communicating with Kristi all afternoon and into the evening. Paul is in the hospital and they are doing an ultrasound in the morning potentially looking for another obstruction. He is stressed and very dehydrated. I have encouraged Kristi to get a good dinner and some rest as she is also very stressed. I hope to see them tomorrow pending how things are going.

Hi All, He is back in the ICU. Probably be in a regular medical surgical bed tomorrow if all goes well. Scary moments.

At first they said the obstruction was complete, but now saying just "chronic" and partial. I don't accept that. He can't get food down and above it is very inflamed and still so much going on there. On the Xray you could literally see a pile of pills there that hadn't gone down!! Imagine that. They know this has to be addressed but now is secondary to everything else.

This doc thinks the cancer is the cause of the adhesions. I really don't know....

He was severely dehydrated and also is malnourished. Dehydration has caused acute kidney failure and also some electrolyte imbalances- his magnesium was very low and potassium was just slightly low. This was (and is) affecting his heart in a bad way. The worst is over but there were many times he should have been shocked in a normal rhythm. Very scary as he was altered in mental status and very lethargic and sleepy when they were happening- talking gibberish.

BTW he lost a total of 20 lbs since Friday night. Since this began he has lost 46lbs total.

They think he has C Diff and also are doing wound cultures to make sure that he is not still having that infection. Doing ultrasounds on his kidneys to make sure there are no blockages and see what the cysts are all about. I pray they aren't mets are are just simple cysts. They are running some cardiac tests and a slew of others too.

He is on strict bedrest now and we had to beg to let him be able to use the bedside commode vs bedpan. When he got up last time his color went all out of both arms, and his hands were pure white- no blood in them at all. They don't know why this is happening yet.... Then his heart rhythm started to go nuts for a short moment (but nothing like earlier).

So its bad- really bad- he is back in there BUT- I FINALLY feel like someone is taking this seriously. The doc is calling in all the troops this time and really digging deep. He is listening and wanting the answers. He looked at Pauls charts for more than an hour before he even arrived and had a lot of questions for us. I am very impressed by him. Things are (have been) being missed, Paul's care seems to be more about saving money than treating him up until now. I can't even imagine this going like this for others- how many people die because of care they get like this? I have medical background and still I am dumfounded by how much he has been failed by healthcare today.

Top it all off as we were leaving the acute care center the doc pulled me aside and said that Paul was being listed as not having insurance.... AGAIN... WTH.... I just don't know about this anymore. I need to call the insurance commission again. I can't keep fighting the same battles over and over again, its way too stressful without all of this added to it. So many bills have come in that now I have to resubmit and fight to get paid, and is the same thing going to happen when he comes home this time? Its like a neverending nightmare. Groundhog day from hell....

I am home. I have no choice but work, as I don't get paid when I am not there. Bills are piling up and stressing me out. I hate to leave Paul, but can't not work. This is costing me income, and costing me in copays that keep adding up. My stress is causing me to flare and I am feeling it badly. I am worried, sick, frustrated, angry, tired and so much more. Somehow I will make it through, I always do, but I really don't understand why this keeps happening- why Paul keeps getting so sick (when actually he just isn't getting better), why the insurance has to be such a nightmare, why my personal leave from his last admission still isn't processed by the company.... what are all these failings I can't seem to control that are dominating my life and adding to my struggles? More copays adding up- Hospital, Acute care center, MD visit, Ambulance ride. I need a second job on the weekends fast.

I am kind of upset with Paul too. He knew how sick he was getting. He refused to listen to me. Instead of going to seek care on the weekends when it wouldn't affect my job he waits once again until he is half dead and now on a day I should be at work and miss an entire day's pay because of it. I say yet again because he keeps doing this. I am sick of it. He needs to either start listening to me about this, really taking care of himself and not letting him get so weak and standing up to these medical professionals himself. I can't fight all the f-ing battles myself. I can't do it anymore.

He needs to participate and make darn sure he stays as healthy as possible- now they are questioning his heart- is it damaged? From what- chemo, dehydration, infection, wasting, etc.. Is he just giving the cancer an opportunity to take over? A chance for something else to attack him- like he needs anything else on top of all this!

I just want to sleep. Beside my baby- not far away from him. I just want him home... I want this all to be over- its a bad dream that I keep having that every time the story remains the same yet changes at the same time....

So its off to bed for me. A fitful night I am sure, with little sleep to be had once again. Letting my lupus come in for a sneak attack and waking up so stiff and in so much pain I nearly crawl out of bed. And off to work to go be the happy little nurse that fixes everyone else's problems and health but her own and her loved ones.....

Paul is still in the ICU but should be getting moved to a regular floor later today. He is doing okay. His heart isn't doing all the crazy beats and rhythms it was (well it is a little bit but nothing like yesterday). His C Diff test was negative which is awesome but still having the diarrhea. LOTS of tests today for him. I hope and pray they get to the bottom of this and figure everything out so he stops all the nausea and diarrhea. He says nausea is in check since he stopped morphine and Zofran on Sunday but still has bad diarrhea. He can keep water down and I think is on clear liquid diet. His CT scan of abdomen showing severe inflammation all over still and its a mystery as to what is causing it. This partial obstruction isn't good- it has to be fixed or get better. If a pile of pills is sitting there, how can they expect anything else to be able to get past it?! I suspect that the medication was making it worse, and that everything was kind of just sitting inside until the diarrhea started dumping it all out Saturday night, relieving a TON of pressure and discomfort that he was having. Still TONS of pain for the poor guy though and some nausea but nothing like before.

His diarrhea is still bad, and that needs to get fixed or he will be facing the same thing next weekend.

They are checking him for clots, cardiac damage from chemo (or other) and all kinds of labs and who knows what else. Consults with surgery, cardiac, GI will be consulted at some point, and I can't even remember what else.... Dopplers on legs and arms I think, xray of his belly (KUB) already done. Pain management is handling his pain issues, I think dietary is coming in. I wonder if TPN will be started again and then he can be sent home on it.... I hope that he can just finally eat enough soon to be able to sustain and not keep losing so much weight.

I am tired but off to work I go in a few minutes hoping my patients are awesome today and being thankful the shipment of flu vaccine has been delayed so I don't have to deal with that.

Hoping the insurance stuff gets sorted out. Need to find the number of the insurance commissioner again I think. I will be working with the social workers and palliative care team to try to sort some of this out.

Wow Beejane, you are so right! Great post and a good reminder for us caregivers.

Thanks!

kukukajoo....I am glad that he's in the hospital and not at home. Hopefully they will find out what is causing the diarrhea and obstruction. You are strong and seem to have a good handle on what should or shouldn't be done for Paul. Seems like it was problems were starting to "pile on" for awhile on you and Paul....you handled everything the best you can and could.

My situation is going downhill very fast, rally hope Thursday's injection will help husband. He is very unsteady and mentioned this to me and I had noticed that the last few days and thought that we needed to address this issue.
Husband (Ted) asked for me to get one of his golf clubs out and he would use it to help him walking and getting up and down (he using it upside down) Hello, doesn't that sound like he needs something a little bit better than a golf club? Well, I called the doctor's office and asked for them to see if they could write a script for a cane and shower chair (Medicare doesn't pay for the chair but with a script, you won't have to pay the sales tax). When husband (Ted) heard this conversation he blew up said that was why he never told me anything it was because he knew that I would go off the "deep end". He didn't want a shower chair and he would buy his own cane if he needed one. Oh well, this will be another debated issue, I'm sure. So we all are struggling, some of us have bigger turmoils than others/

Keep posting kukukajoo, so we know what and where you and Paul are on this journey.

Sal