Confusion update from tovah - please help

[Tovah]

I want to thank everyone who replied to me yesterday. It helped me at least get to sleep.

I went back to the hospital today and my husband actually seems worse. He didn't remember my name and when asked, said the wrong year and basically got no questions right.

They said that he's pretty far behind the other cardiac patients at this time. They still haven't been able to get up and walk. He's pretty much off all narcotics also.

I'm very worried at this point.

Any help...please!

 

[kfay]

What are his Dr's saying, or have you talked directly to them about this? Some people can be totally out of it and may take a little longer to come back around, he may be one of those people. If you are truly that concerned, I would make a point to be there the next time the Dr's are around and ask for a neurological consult at least. Hang in there, hopefully he'll get sorted out sooner rather than later.


Kim

 

[Greg a]

There is a condition called pump head see here http://en.wikipedia.org/wiki/Postperfusion_syndrome how long was he on the bypass or how long was his operation?

Due to the length of my operation and subsequent coma I had it for an extended period (my wife says I nave always been an overachiever:biggrin2 I saw spiders and had my sister running around the ICCU killing them:eek2: (a heck of an actress) all in all my family found it easier to deal by humouring my fantasies rather than getting the wrath of my anger and they were angels about it :angel:

My wife never left my bedside and when my children and grandchildren came in and she stepped out i would tell them that she NEVER came to see me.....my gawed I'm lucky

Godspeed as this too shall passs and rather than be a "new normal' ne will return. Don't forgett his mind and body have undergone horrible insults that take time to be forgiven...IT WILL FORGIVE

He really needs to walk ASAP as muscle mass deteriorates within 24hrs as I was in two extended comas it required EVERY bit of fortitude my family could muster to get me moving again

 

[Jkm7]

Is he moving his limbs? Does he smile?
Is there a chance he's had a stroke?
I think it a good idea you ask for a neurological consult to be done as soon as possible.
It is understandable you'd be very nervous but it's not time yet. He's still soon after surgery and we all experience it very differently. It is possible he's not fully rid of the effects of all the meds he was given during the surgery.
Maybe you might wish a conversation tonight or tomorrow with his surgeon.

We all sincerely hope this resolves quickly........
Please let us know how he is doing.

 

[Lynlw]

What are his Dr's saying, or have you talked directly to them about this? Some people can be totally out of it and may take a little longer to come back around, he may be one of those people. If you are truly that concerned, I would make a point to be there the next time the Dr's are around and ask for a neurological consult at least. Hang in there, hopefully he'll get sorted out sooner rather than later.


Kim

I agree with Kim, Hopefully everything is fine, your husband is just coming around a little slower than most people do. If he hasn't been seen by one, I'd request a neurology consult, have they told you anything or what the possible reasons could be? Also have they done or ordered any tests like a brain scan? Since today is Thursday I, I would start asking now since most hospitals not alot happens on weekends and if things dont get done friday they often, but not always have to wait until Monday.

 

[Tovah]

Thank you so much for your thoughtful comments.

My husband is 20 years older than me, yet I never thought we would be up against something like this. We just never discussed it.

We were both looking forward to him having his "new" heart and he and I would resume traveling and such.

I have been there for both visits when his doctor came. He saw my husband very confused yesterday, but didn't seem too concerned. Today, when I was in the ICU with my husband. he took me in the hall and said that they are hardly giving him any pain meds now, as that would make things become clearer for my husband.

When I walked in, I said I wanted a neurologist to see him and, at first they said no, then said they would send someone up.


When I went in first thing in the morning, he actually seemed lucid. He asked his nurse to leave the room. In a quiet voice, he said, "I'm dying". Just that simply.

I told him that he wasn't, that the surgery was a success. It was just taking a little time for things to come together. He just smiled.

Then, he seemed to go into that other state where I can't reach him.

I go over and over in my mind whether we made a mistake in getting this done.

I want my husband back and i'm scared to death.
I mean, is it possible he knows something I don't?

 

[kfay]

Oh, I'm so very sorry for you and your husband. I know it had to break your heart for him to say that to you. He might feel like he is dying at the moment because you do feel like you have really been put through the ringer at the point that he is at. However, the medical staff are monitoring him and have a very good idea of what is going on with him medically. They would know if he had a bleed somewhere or an infection brewing, etc. All those machines that he is hooked up to and all the blood work they do constantly is for a reason.

So, did neurology ever show up? If not, I would ask about it every chance I got. You are really his best chance at coming out of this unscathed. He needs to you to be a strong, active advocate on his behalf. It sounds as if you are doing a good job already, but keep pushing, nicely but firmly. I think the idea of checking to make sure he can move all his limbs and squeeze your hands etc. is a good idea. Have him smile (if he can!) and make sure his smile isn't lopsided. If all of these things are good, I'm betting on him just needing time to get all the drugs out of his system. If he is older, it definitely can take longer. Hang in there!


Kim

 

[Ovie]

I'm sorry to hear about this, and I hope you get answers quickly as to what is going on.

I'll throw a little something your way that was in the handbook my hospital sent me on information for my surgery, but there were also areas for family members, and this may be common sense, but it had an area for my family to read, and it was directed towards confusion after surgery. What it does is basically tell them to tell them what has happened, where I am, time, date, year, etc. obviously I'm sure this has been done, but if he's talking, and comprehending things, have you brought up certain moments that lead up to surgery, like you said something about traveling? Maybe say " can you believe just a few weeks ago we were on that hike, or vacation and this and this happened, now you're sitting here after surgery?!"

I know it may not work, and maybe you've tried this, or even understand what I'm trying to explain, it's just something I read in my book, and maybe constant pushing will spark something.

I hope everything ends up ok and you get your husband back.

 

[escargome]

Hi Tovah,
I hope that by now the neurology consult will have shown up. I agree with Ovie, talk and talk to your husband, tell him where he is and remind him that he is getting better a little every day. Also remind him of all the good trips and things you have done and are going to do. And if that neurologist still hasn't shown up yet, then be the squeeky wheel and keep asking over and over. I pray that he gains strength every day. I know this time is difficult for you but be your husbands biggest advocate.

 

[sarahsunshine]

Tovah,

I’m really sorry that you and your husband are going through this, and I hope that in a short while it will be a blip on the horizon. I am curious about the evaluation from the neurologist.

There is a condition called “ICU psychosis” where people go “insane” from being in the non-natural conditions of the hospital. There is a thread that describes the various things that people have done (people from this very web site!) when faced with the conditions of the hospital – loss of natural light rhythms, beeps, intercom, constant strangers, medication, etc… It’s really very stressful on your system. (http://www.valvereplacement.org/forums/showthread.php?34284-ICU-Psychosis&highlight=ICU+psychosis) Many people feel that the nurses are plotting to kill them, etc…

What Ovie describes are ways to help people feel more human and get over the symptoms of ICU Psychosis.

It does, however, sound like your husband had some improvement, at least knowing who you were (big improvement). Is he at a stage where he can get out and move around, even for a short while in a wheel chair? Change of scenery may help him as well.

I hope tings have improved since your last post. We are all worried as well, please keep us updated!

 

[Julian]

I'm sorry to read about this stressful experience. As the rest have stated get an answer from the Neuro. If the neuro, and cardio don't seem too worried then its most likely something that will pass no matter how impossible it may seem right now. Many people have uneventful recoveries while others have long slow recoveries. I was going a little nuts in the ICU and for the whole hospital stay for that matter. I kept having to fight off the impulse to want to kick a pregnant nurse or something crazy like that. These feelings lasted for a few months after surgery slowly getting better every week that went by. Other people are confused or just plain out of it mentally for weeks if not months after the surgery. There is no telling what group you will fall under. One thing is true in all this, most people make almost full recoveries to have a "normal" life eventually after this surgery. Time is the key though I know this is hard to accept and be at peace with right now. The odds are with you not against you.

KEEP CONFESSING WE WILL TRAVEL AGAIN WE WILL HIKE AGAIN WE WILL HAVE NEW AND BETTER ADVENTURES AGAIN!

 

[Greg a]

Questions for you ....how long was hubby's operation?

Were there any complications during surgery ? Eg I had a bleeder and needed a coagulant drug when that was done I wentg inti VTACH and needed ohen heart shock to return to normal

Is he up and moving now ....if not is he being moved to prevent pressure wounds better known as bedsores?

What has neuro said?

How are his wounds healing ...incision and drain

 

[Tovah]

He was moved to telemetry today and he was so agitated that he needed haldol. He is extremely unhappy. I know he wishes we had never had this done. I'm brokenhearted right now.

The surgery lasted about 5 hours. He has been up walking, but not enough.

They also did a cat scan on him today. I think that I'm going to have to schedule a time to really talk to the surgeon. I'm really getting angry now.

 

[normofthenorth]

I didn't catch how old, Tovah, just 20 yrs older than you. Certainly as people age, and especially if they're not well or strong and fit, they can more easily lose cogency when physically stressed. My Dad made it to 98, generally amazingly sharp until the end, but he had 4 or 5 episodes of transitory dementia (my phrase) scattered through his last decade. The first time it was a reaction to synthetic narcotic painkiller drugs (maybe Vicodin), another time it was a bad sinus infection that made him nuts. Most of the times, he didn't slow down much mentally (which would have been easier on us!), he just saw things that weren't there and believed things that weren't true. Often he'd wake up from a dream, and nobody could convince him that the dream was a dream. (Dad was used to being one of the sharpest people in the room, so he'd carry on these conversations the way he'd taught us how to argue logically when we were kids: "OK, let's assume for the sake of argument that you're right, and we're NOT in China. Then how do you explain. . ." It was exhausting, and occasionally hilarious, but also occasionally nasty and divisive.)

Each time, it resolved itself completely in a few days, either when we identified (and discontinued) the offending drug, or when the infection was cleared up. Interestingly (and not surprisingly, if you think about it), his false "experiences" didn't get erased when his brain functions recovered. We just tried not to talk about his trip to China(!).

For any of us, that kind of "losing it" can be one of the most distressing and upsetting things that we've ever experienced, and it can be terrible for the patient's family, too. Do get answers and insist on good care, but also try to do your best to respond with as much patience and love as you can muster. And don't sacrifice your own needs (like sleeping and eating and even recreation), either!

 

[Tovah]

Thank you all so much.

Here's the update:

I went to see him today and he was completely calm and much more aware of his surroundings. It was a pleasure being there with him. He even watched tv today, which he hasn't done in 4 days.

The cat scat came out normal.

The doctor said that he may be ready to go home in a couple of days.

Is that possible? He still has an open wound in his thigh where they took the artery.

It also takes two strong people to even get him into a sitting position.

I think it's too soon.

What do you all think?

Thank you so much for all the thoughtful replies.

My husband is 75 years old.

 

[Lynlw]

Glad to hearthing are going much better. What a relief. usually once you can start walking, things move pretty fast, BUT if you think it is too soon when they start talking about discharging him, tell them what your concerns are. Hopefully in a couple days he'll be able to move and sit on his own. Make sure he oes everything they tell him to as far as breathing exercises, walking etc.

 

[Jkm7]

Sounds like good news, Tovah.
Certainly sounds like he's improving.
What do you mean an open would in his thigh? I assume you mean they took saphenous vein to use in a bypass but wasn't the wound closed with stitches or surgical glue? I had a roughly 1.5" incision that has healed to invisible but never had so much as a bandaid on it. It was closed with surgical glue and never gave me any issue.

It also sounds like he is very weak from being in bed for days and that is to be expected. Hopefully the nurses will get him up and moving in the coming few days. First they'll have in in a chair and walking in the room until he has the strength to walk the hallways. This is so important to his healing.
Depending how much his confusion clears in the next few days, it isn't totally impossible he could be ready to go home but you'll have to judge as you watch his progress.

You are a wonderful advocate for him and trust your instinct if you feel it is too soon but keep in mind the risk of infection. The biggest risk from lengthy post op hospital stays is infection and that is the last thing you want.
It does seem fast for him to go from being so confused and unhappy to them talking about going home but it is possible. Take it one day at a time and if you think him not ready, ask for another day or two.

I keep checking this thread hoping to hear good news and your post is good news. Very happy to hear he is going in the right direction.

 

[Tovah]

Thank you so much!!!

The wound is open and blood was oozing out., They finally put a band-aid on it today.

Do you think that the longer he stays in the hospital, the more chance for infection there will be? Or, would he have more chance of an infection at home?

I can't wait for this to be behind us and I can be the person helping someone else out.

One day at a time.

 

[Jkm7]

Yes, I do think the longer any of us are in the hospital the higher the risk of infection. Hospitals have lots of germs.... I'm not being funny.

The nurse uses her stethoscope on patient A, hurries to see patient B and before you know it, that same stethoscope if on the next chest where there is a new incision. Yes they wear gloves and wash but the sooner a patient can safely leave a hospital the better.

I had a small infection at the bottom of my chest incision week 2 I was home. It came from my wearing a bra too soon and it rubbed a small spot. It was easily treated and healed fine but it made me very aware to check all incisions carefully and often. Any hint of infection should be looked at immediately. That incision is very near the heart.

Does the wound on his thigh look 'clean'? No sign of infection? Maybe you could ask one of the doctors why it is oozing? It's possible it's fine and this surgeon closes differently but doesn't hurt to ask about anything that troubles you.

None of this should alarm you but it is worthy to keep in mind and take note of when checking his incisions.
One of our best friends is an MD. When he and his wife came to see me post op, the last thing he said to me as he left the very excellent Mass General Hospital was to not stay one more hour longer than necessary. He wanted me home.

Your DH sounds on the mend and that is the best news. The hospital can arrange home help for you if necessary. You can have a visiting nurse or other services which might be great help. Most CCU have social services/patient reps to recommend. That person most probably will visit with your husband and you to discuss what needs have to be addressed.

ALL BEST Wishes to you both.
Hopefully it is all uphill from here.

 

[epstns]

Tovah,

I haven't posted, but I sure have been watching this all unfold. I am supremely relieved to hear that your hubby is so much more like the man you know. We all felt that this would happen, but I understand that you could only be reassured when he "became himself" again.

One thing I will mention from experience -- The doctors at the hospital will tell you when they think hubby is physically ready to go home, meaning that they feel he is medically stable and doesn't require their watching for now. They do not know when he is emotionally ready to go. Some patients are emotionally ready before they are physically equipped to go, others the opposite. I was one who was deemed medically ready to go home, but I needed just that one more day to be emotionally ready to go. My issue was that I was having trouble breathing when laying flat in bed. They said I would do fine; I was actually terrified to try to sleep and would continually wake from sleep seemingly struggling for breath. We finally convinced them that if I could get one "good" night's sleep, I would be ready to go. My point here is not to tell of the issue or problem, but to let you know that if your husband doesn't feel that he can go home safely he should speak up and work out what is best for him.

Give hubby all of our good wishes and tell him we hope to hear from him when he is back on his feet.