Hubby Back In Hospital -Ambush Begins Again

[PrimeTimer]

Hubby now has ICU Delirium; an acute and fluctuating disturbance of consciousness and cognition, is a common manifestation of acute brain dysfunction in critically ill patients, occurring in up to 80% of the sickest intensive care unit (ICU) populations. Critically ill patients are subject to numerous risk factors for delirium.

Our phone date went well except that he'd veer off the conversation and talk nonsense. For instance, while talking about the angioplasty they did on his arm, he said "Yeah! Pelosi's house is just around the other side of that". I presume he was speaking about Nancy Pelosi's house but asked him why he was bringing that up. His reply? "Because that's where her house is!" I knew something was wrong. I know he would not talk politics in the middle of a conversation about an angioplasty. Unless in his mind both subjects are painful to him and just may very well be. But still, one has nothing to do with the other and I know for fact that no one is living in the artery of his arm. Not even Pelosi. So we ended the conversation and said our goodnight's. By the way, the nurse was there the whole time and said "it was probably the sedatives we gave him". I am glad she didn't want to talk politics either because I am in no mood.

When I called today I was told they suspect he has "ICU Delirium". They will reassess his mental abilities again tomorrow and to help (if he's still stable) move him to a regular room. They removed the feeding tube but he gags on solid food so until his throat heals from having had a breathing tube stuck down it for nearly two weeks they will give him soft food. He was still going between holding a normal conversation and delirium or hallucinations. They decided to re-sedate him so that he will rest. They will give him a sleeping pill to force him to sleep at night. Part of the problem with patients who suffer ICU Delirium is that if they are in the ICU too long, they have trouble with telling if it is daytime or night. Moving him to a regular room should help, especially since they have large windows so he can see sunlight and the outdoors. More bad news tho...he needs a fingertip amputated. I wonder if he's going to try to tell me they can park it in Pelosi's garage.

Meanwhile, his sister has made such a nuisance of herself calling the ICU for updates and demanding doctors and surgeons to call her, they asked for my permission today to remove her from the contact list. I assume she was rude, foul mouthed and out of control. I was mortified. So the idea of her being able to call and get updates herself like a mature woman has backfired. I'm afraid she has endangered the relationship my husband and I have with his doctors and surgeons -and we need them!  And so I called his mother and her spouse (since I know they are now basically the only ones speaking to her these days). Told them what happened and that the ICU will no longer be taking her calls. I am my husband's "Main Point of Contact" and I will call just one family member with updates and they can pass it along to each other. That is that. Except I suspect the nasty voicemails from his sister to start up again but which I will just have to ignore. Not surprisingly, his mother was nice to me today. Of course she wants updates and so of course she is going to be cordial and that works for me!

As they say, "tomorrow is a new day".

[MooseMom]

Oh gosh, Pea Tea, every day seems to bring a new obstacle.  I imagine ICU staff see this sort of thing fairly often and are well able to handle it.  I know it must be frightening for you, and I am so sorry this is yet one more thing that you and hubby have to cope with.

Who would have know that Nancy Pelosi would "interfere" with your phone date?  LOL!  I mean, I just know how much you both must LOVE Nancy Pelosi!!!   

Good...you got hubby's sister removed from the contact list!  I'm glad his mother is more amenable to your wishes.

Thanks for the update.  I always appreciate the news whenever you are in the mood to share it.

[UkrainianTracksuit]

I certainly vouch that ICU delirium is one heck of a ride!

My husband was petrified if I started talking about Daesh (always on the news, a topic we often talked about because of work) randomly. Then, I'd randomly transition to bikini waxes, and who knows what else.

When they finally took me off oxygen (completely, not just the ventilator, and then gradually reduced it from "high need" to basic ol' tubes in the nose), I was petrified to go sleep because I was like "I'm not going to wake up!" So, the solution was tranquilizers/sedatives, that only had the opposite effect: more crazy. Talk about attempting to stay up 24/7. It was like they gave me meth instead of some sedative cocktail plus sleeping pills.

When the doctor felt that I was stable enough, they'd roll me to dialysis with my bottle of oxygen, and it got all crazy in there too.

The effects continued for weeks (I'd say months) after and I actually do have permanent scarring from the breathing tube.

All of that said, I have a slight feeling what your husband is going through and you have my sympathies!

Not that it is my business, but has his mother been the more level-headed one to deal with in the past? Perhaps not the nicest, but easier to deal with? Hopefully that stable relationship continues to facilitate the flow of information. You know what to do: don't interact with crazy. Block her calls, ignore her messages.

[PrimeTimer]

Maybe I should tell him that he shouldn't let Pelosi get under his skin like that. Now I wonder if that's where some of his socks have disappeared to.  OMG! NO WONDER his artery was clogged! He's a hoarder! 


UT: No his mother has not usually been the level-headed one but I suppose you could say she's a heck of a lot easier to deal with than his sister.

[PrimeTimer]

Consent to Amputate:    Because hubby is still experiencing delirium, I had to be the one to give consent for them to amputate his right index finger and partially amputate his right ring finger tomorrow. The surgeon tried to explain it to him but he got upset because he was previously told (by the vascular surgeon) that since it looked like new tissue growing under the necrotic tissue and no bone infection, that there would be no need for amputation. However, the plastic/reconstruction surgeon says that despite new tissue, it would probably necrotize again and he'd end up needing an amputation anyways. I can understand that. I can understand "why take the risk of infection and possible death". A diabetic as I've seen my husband suffer through, heal very very slowly. Too slowly. And during that time the diabetic can end up with infection. For a diabetic and person on dialysis who's immune system is compromised, an infection can quickly turn deadly. I gave my consent for the finger amputation. God forgive me and I hope I've made the right decision.

Next, once the situation of his fingers are under control, he needs a Heart Catherization aka "Heart Cath" performed. His ejection fraction is only at 20. Normal should be 60. He has a weak heart...and so they need to find out why. They suspect a weak valve. That will be the next procedure.

Tried talking to him today. It was rough. They ruled out a stroke but he can't speak clearly enough at times to be understood and still experiencing delirium. Even if he just answers "yes or no" questions I have discovered that he is unable to give a true honest answer. For instance, I asked if he had PT therapy today. He said no. But he had. I asked if he had speech therapy today. He said no but he did have therapy today.  I felt so emotional with speaking with him and how everything must be so hard for him right now. I will call him back later tonite. Going to keep it light and cheery. Only positive. I advised the family to do the same and why.

Speaking of family, all but his sister have done an about face. A complete turn around in their behavior towards me. Not sure to trust it or how long it will last but for the moment they are being cooperative -and polite. The nasty voice mails from his sister continue. The family is going to have a word with her. Don't know if that will help.

Tonight I am going to try talking to hubby again, hopefully before they give him his sleeping pill, And then I am going to try to get a grip for being the one to have decided that he loses a finger. For all you spouses, partners and significant others and next of kin, this whole situation is hard and getting harder. I admit. So now I've got to figure out how to live with all these emotions I am feeling and decisions I make. I don't like this but I am not going to let the "duty" go to someone else. My husband needs me and I know he'd do it for me....make hard decisions. We've talked a lot of life support but not amputations. Wish we had. 

 

[cassandra]

Dear PT how I wish I could gie you some more support. BUt in this situation you find yourselves in, you just have no choice. I wish both of you love, strength, luck and wisdom.


Love, Cas

[MooseMom]

I'll tell you how you are going to live with your decision to have the amputation done.

1. You consulted the experts and were given all of the pertinent information.  You are not a doctor, so you took advice from those who are.

2.  You will remind yourself that you are a smart woman and are fully capable of making informed decisions.

3.  You will also remind yourself that you do not have a crystal ball and cannot see the future consequences of your decision.  However, you have been informed of the most likely consequence of a non-decision.

4.  You will remember to tell yourself that you made your decision in good faith and with love and concern.

5.  You will not look back

6.  God has guided you. He has not left you alone.  You will remember that, and you will spend your time helping your husband instead of wasting your time second guessing and undermining yourself.

That's how you'll do this.

 

[Simon Dog]

My wife and I went through the same decision agony when it came time to have the vet execute our best friend.   Like you, we could not get him to directly tell us what he wanted - we were put in the position of trying figure it out.   I realized I would want the same treatment, as a human, if I were waking up in my own excrement unable to move out the steaming pile.

Afterwards, we came to be even more confident we are at peace with what happened.    I hope that you find the same peace after the procedure has been performed.

[PrimeTimer]

Thank you everyone for the kind words. They help enormously. Hubby had another bad day.

After recovery from surgery, they moved him to a regular room. He slept most of the nite. He was in a lot of pain so they gave him pain meds and he promptly fell asleep. That was good because he needs all the rest he can get. Then this morning, they brought a dialysis machine to his room but about halfway thru, his BP dropped and he became short of breath and lethargic. He spiked a fever of 102.9, which is a bit higher than the postoperative fever they may expect and then he became unresponsive. They rushed him back to the ICU. They decided to do another CT of his brain to check for clots, stroke, brain damage, all of the above, etc, etc. Should know the results late tonite or tomorrow.

Several hours later he started coming back around and opened his eyes and took a look around. He couldn't speak clearly but he was trying. He seemed to know where he was at but they aren't sure. As for the high fever, it's leaning towards Sepsis. Nasty Sepsis. Dammit. They've got him loaded up on antibiotics. And they put a feeding tube up his nose this time instead of in his belly -just in case he can't swallow meds or food. He tried taking it out but they don't think he knew what he was doing. That's actually common amongst patients who are not coherent or cognizant. It's a sad thing to watch. They have to restrain the patient's hands at that point.

The good news is that he is breathing on his own -no ventilator. He's on supplemental oxygen but thank goodness, NO ventilator. Tomorrow is a new day. We wait. I sweated all most of the day but don't think it was the Prednisone. I can't talk to hubby right now but I close my eyes and talk to him and can only pray that he hears me. Drives our cats crazy when I do that but if I cry they get more upset. So I talk to hubby in the only way I can right now. In whispers and soft pleads and begging. Please hear me honey...

[kristina]

... Hopefully the antibiotics "do their job" and work well a.s.a.p.
and hopefully you are soon together again  ... fingers crossed ...

Best good-luck-wishes from Kristina.

[PrimeTimer]

The Ties That Bind      The good news is that my husband remains stable and breathing on his own. But they are keeping his hands restrained. He is still experiencing delirium and kept pulling out the nasal-gastro feeding tube. So they restrained his hands. Tied them to the bed. They put the feeding tube in because he was gagging and choking on food. A Speech Pathologist has started working with him and performed a "modified barium study" today of his throat and ability to swallow. He passed the test. This means his throat is fine and swallowing shouldn't be a problem. I said perhaps he keeps pulling out the feeding tube because it's well, irritating him. The doctor agreed. They said it could also be a part of the delirium and that he doesn't realize he's pulling it out. So they are going to try giving him pureed food and see how he does without the feeding tube. I asked that if possible, have him call me while his hands are unrestrained...we have ties to our hearts. Yes, THOSE ties that bind.

Meanwhile, the delirium causes him to still be confused and not always coherent. He knows his name, the date, year and where he's at but at the end of almost every one his spoken sentences, he mumbles. Can hardly understand him then. They also mentioned that because he is a dialysis patient, calcium in the brain and body build up and cause similar problems. The latest CT scan of his brain came back "clean" with "no findings" meaning, no stroke, no tumor, no brain damage. They said perhaps the meds and anesthetic he'd been given hasn't quite dissipated yet. They want to do a heart cath but not until his mental status improves. They think he has a damaged heart valve but do not want to bombard his body/brain with more sedatives and anesthetic just yet. So we wait.

Something new for him that I am actually happy about; Seroquel aka Quetiapine. They are giving this to him for agitation and to help him sleep. It actually has a variety of uses. It is not a benzo drug and is not habit forming or addictive. Wish his Neph had known about this instead of just saying "no longer allowed to prescribe pain meds". That's not a solution and certainly does not help the patient. The doctor at the hospital had guessed that he's had stress from experiencing prolonged pain and that it might be adding now to the delirium. Hearing that made me want to cry but also angered me because until he landed in the hospital, none of his other doctors even tried dealing with his pain. They just kept blowing him off, saying he needed to see a pain specialist. Okay, so how come they didn't refer him? How come they don't know about Seroquel? Well, I may as well stop here before getting too worked up. I gotta breath. And altho he can't speak clearly yet, hubby is breathing easier too. No phone call yet tonite but tomorrow is a new day.

[PrimeTimer]

Look Ma, No Hands!     First, let me clarify this; my husband still has both his hands. A couple of his digits have been uh, modified, but he still has his hands. Every day is a challenge for him but with that sometimes comes success. And hope. They’ve been doing a little bit of physical therapy with him. The other day he was able to stand up beside his bed -without help! And he did it twice! I imagine it must’ve felt a little like when we were kids and rode our bicycles for the first time without hands. C’mon, you gotta remember THAT! We thought we were so cool doing it too. For the mothers who witnessed it, the feat probably gave them a few gray hairs. If you were smart you didn’t mention it to her let alone show her. But it felt so great to ride without any hands. Back to standing up…Normally most of us don’t think a whole lot about standing if at all but, when you’ve been in the hospital as long as hubby has and as weak as he is, you feel like you’re on Cloud Nine. I’m so proud of him!

[iolaire]

I’m glad to hear he is up that sound promising.

[PrimeTimer]

Thanks, iolaire. And thanks too to everyone who has been sending well-wishes and positivity our way. It was such a big deal to him to be able to stand up and to do it on his own. Even something as simple as having his appetite back gives him hope. He still has to eat pureed food (he calls it babyfood) but surprisingly he says it tastes good. He's got a long road ahead of him but has to do it in baby steps. So his description of the food was kind of fitting.

[Michael Murphy]

pT in 2016 I had my second major heart attack and my ejection fraction was measured at 20 percent.  I survived 3 major operations the last a 7.5 hour ablation and icd implantation.  Obviously I survived and despite a very irregular heartbeat still enjoying my self.  I am living proof that it is possible to live with a 20 percent injection fraction but still enjoy my life.  I hope your husband pulls through and embarrasses the doctors by his thriving under difficult circumstances.

[PrimeTimer]

pT in 2016 I had my second major heart attack and my ejection fraction was measured at 20 percent.  I survived 3 major operations the last a 7.5 hour ablation and icd implantation.  Obviously I survived and despite a very irregular heartbeat still enjoying my self.  I am living proof that it is possible to live with a 20 percent injection fraction but still enjoy my life.  I hope your husband pulls through and embarrasses the doctors by his thriving under difficult circumstances.

Thank you SO much for your encouragement, Michael Murphy! Your experience and strong will to live gives me hope. I am quite sure your whole positive attitude, along with what I am guessing is a "failure is not an option" outlook on life has something to do with that. It helps me tremendously, thanks for sharing. I really mean it.

Hubby might have a heart cath done tomorrow but don't know for sure yet. I am waiting to speak with his Cardiologist and it has been like pulling teeth to get him to call me. Meanwhile, the case manager at the hospital called and said my husband has used up "all his Medicare days" to go to any Rehab Facility when he's discharged from the hospital (whenever that will be). I guess once they figure what to do about his heart he will have to come home and rehab and exercise here. I pray he can do that. He and I will just have to keep each other going until we get better. 

[Hereware]

pT in 2016 I had my second major heart attack and my ejection fraction was measured at 20 percent.  I survived 3 major operations the last a 7.5 hour ablation and icd implantation.  Obviously I survived and despite a very irregular heartbeat still enjoying my self.  I am living proof that it is possible to live with a 20 percent injection fraction but still enjoy my life.  I hope your husband pulls through and embarrasses the doctors by his thriving under difficult circumstances.

Thank you SO much for your encouragement, Michael Murphy! Your experience and strong will to live gives me hope. I am quite sure your whole positive attitude, along with what I am guessing is a "failure is not an option" outlook on life has something to do with that. It helps me tremendously, thanks for sharing. I really mean it.

Hubby might have a heart cath done tomorrow but don't know for sure yet. I am waiting to speak with his Cardiologist and it has been like pulling teeth to get him to call me. Meanwhile, the case manager at the hospital called and said my husband has used up "all his Medicare days" to go to any Rehab Facility when he's discharged from the hospital (whenever that will be). I guess once they figure what to do about his heart he will have to come home and rehab and exercise here. I pray he can do that. He and I will just have to keep each other going until we get better.

I'm so proud of you for facing all that kinds of troubles positively. You are indeed strong and may this attitude continue. We know we can't give help physically but, just like you, we are always hoping for better results.

[PrimeTimer]

Can You Hear Me Now?    Hubby had the heart cath yesterday. Actually an angiogram. Cardiologist says all his coronaries look normal but he does recommend a stent. The doctor wants to wait on that until hubby's mental status has improved a little more. They don't want to bombard his brain with more anesthesia. He's still experiencing delirium but it is what they call the "waxing and waning" phase now. It comes and goes. For instance, the other day he thought he saw a cat wondering the halls at the hospital and on another occasion he thought one of our own cats was cuddling in bed next to him. He kind of giggled when he told me that...he said he wanted to know if it were possible that our cat was there or was it a dream. I told him it was a dream...he laughed and said "thought so". At least he is starting to realize the difference between the delirium and reality. He just wants to confirm it with someone. I know it's not a funny subject but he and I do laugh about it. I think this helps him to talk about it. No one likes to think they've gone mad. Worse yet, no one wants to hold all their fears inside and suffer alone. Everybody needs some reassurance that they are going to be alright, even when they aren't.

More good news, hubby seems to be making up for lost time. He remembers his families phone numbers so has been busy calling them (and me) and talking up a storm. Until the evening and by then he has worn himself out. Between being on the phone and doing PT in his room twice a day he has sort of been getting a work out. They think he may get to come home later in the week. We'll see. I sure hope so. It's hard to rest without him here. I wake in the nite and think I hear him but of course he's not there. I've stopped getting up to check. Will be a heck of a lot easier when I can just reach over and feel his hand. Or tell him to stop hogging the blanket. 

[MooseMom]

Oh, this is a great development, Pea Tea.  I'm ready for some good news!  Hubby's something of a chatterbox now, eh?  LOL!  Soon he'll be talking your ear off...at HOME!  Yay!

[cassandra]

Great news    more vibes on the way 


Lots of love,Cas

[PrimeTimer]

Who's On First?      Oh boy. Here comes the clown car. It reminds me of that old Abbott & Costello comic routine "Who's On First?" Only this isn't funny. And when he wakes up I'm pretty sure hubby won't be laughing either. As of yesterday the game plan was for him to be discharged today. But nope. Not going to happen. Not because there is a delay in paper work or prescription-writing but because HE'S HAD ANOTHER PROCEDURE TODAY! I am ticked. Really ticked.

They did an angioplasty of his lower left leg. There were no blockages. Well gee, that's great except that I was told they did his left leg LAST WEEK!! I am ticked that no one called me about any of this today. I had to call and find out on my own. And just the other day the Cardiologist said he would need a stent but wanted to wait just a little longer so that they don't bombard his brain with more sedatives/anesthesia too soon while still feeling the effects from ICU Delirium. SO...now I wonder what today's leg angioplasty did? They sedated him and now he is sleeping it off. I mean, WTH? One doctor puts off a procedure in order to help him but another doctor comes in and performs a procedure! Guess the two don't talk. They certainly don't talk to me. I swear, the s**t never ends. They not only need to teach "bedside manners" in med school but perhaps a lesson on "communication" would serve them well. Or a "connect the dots" map with the words "talk to the wife" printed in the middle of it.

I once had a job where I had to be absolutely without-a-doubt 100% accurate or else, like I was told, both me and the department would lose all credibility. Failure and miscommunication was never an option. I think doctors communicating with their patients and their spouses/next of kin/partners, etc should exercise the same standard.

Abbott and Costello on you-tube

https://youtu.be/kTcRRaXV-fg

[PrimeTimer]

Over 120 Days Now     Okay, so I am wore out now. Was told hubby may be discharged Monday. Today is Tuesday. Apparently he has used up his allowable days with Medicare so unless we can make a cash deposit/down payment and weekly/monthly payments ourselves, he cannot be discharged to a short term facility for physical therapy rehabilitation. Thus the delay in being discharged. They (doctor/hospital) also do not want him to be discharged to me to come home because they think I am an invalid (I'm not). So they are arguing that he has to go to a long term nursing facility and not a nice place. Don't know how they think they will get paid because they won't.

From what I read, by law, as my husband's spouse I am designated as his Power of Attorney if he is unable to make decisions for himself. Well fortunately, he is able to make his own decisions. So now he has to fight with them to be discharged to come home to me. We can do this. I can help him rehab...walk, lift weights, stretch, etc....and I can cook him healthy meals. It would be a lot better than being in the hospital because while the PT people visit him often, they come for just a short time and then the rest of the day/nite he is left in bed....with bedsores now and forced to use a bed pan. He can stand on his own and feels he can walk to the bathroom or use a walker to go on walks but nope, the hospital is too afraid of litigation if he should fall. So they leave him in the bed all day/nite suffering. How is that any better than the care he can get here at home? I am beyond sad. I am beyond angry. I feel beaten, as tho I have lost the battle. I feel like such an efin failure being unable to be with him and bring him home. Having Sarcoidosis sucks. I'm afraid that if he is ends up in a nursing home for the "poor" that he will only languish and I may not see him again. My heart breaks.


And my A-hole father in-law left a voice mail asking me why my husband isn't using the cell phone he sent him several months ago. He didn't bother asking how my husband was doing or how I was doing, he was just concerned about that damn cell phone. His message made me want to vomit. Can it be any worse? Oh yeah...but right now this is my living hell. 

[iolaire]

Talk about a rough 120 days - wish you continued strength and for him to get his way discharge wise.

[MooseMom]

I know you are not an "invalid", Pea Tea, but are you honestly sure you would be able to take care of him should he come home, say, by the weekend? 

[PrimeTimer]

I know you are not an "invalid", Pea Tea, but are you honestly sure you would be able to take care of him should he come home, say, by the weekend?

MM:  I'll put it to you this way; he would stand a better chance at building his strength back up here at home than he does lying in a bed in a nursing home or any hospital. He feels he can move about, perhaps with the help of a walker but they won't let him because they are afraid he may fall. They are afraid of being sued. Okay, I get that, I really do but it does a patient no good to lie in bed with bed sores waiting for an hour of physical therapy and then back to lying in bed and suffering. I may not be at my best either but I  am not bedridden and actually try doing a little more as I feel up to it. With the exception of being home for a few weeks in March/April, he has been in a hospital and facility for over 120 days now and wasting away. The only reason he had returned to the hospital was for an angioplasty on his leg but things went south during the procedure. But now he's at the point where he is literally being forced to stay in bed. No one gets him up to walk him or to even push him in a wheelchair just to be out of that bed. He needs to get up and out of bed as often as he feels up to it and begin to slowly build up some strength. That's not going to happen when they just leave you lying in bed. We have a walker, a wheelchair and a shower chair here at home. And I can cook small meals. And he can get outdoors if he wants (with the walker or wheelchair) and get some fresh air. We can push each other. I am up to it if he is. Just gotta get him out of that damn hospital.