Tovah update 2: Need your help with questions

[Tovah]

Hello all:

I have just found out that we may finally find a neurologist for my husband. He went in for Open Heart Surgery two weeks ago tomorrow and his cognitive functioning is very poor. He is using the wrong words, wrong phrases, gets confused talking, etc. The doctors are saying that this will resolve and I am worrying prematurely.

I do not believe this and believe he needs help ASAP, at least to get him going and for him to not feel so frustrated.

My question: What are the most important questions to ask the Neurologist tomorrow? Also, have any of you had this level of confusion and how long did it last?

Thanks in advance,
Tovah

 

[AgilityDog]

most important question?
What is his DIAGNOSIS?

Unless/until the doctor figures out what is wrong, it's hard to treat it. A stroke is different from an infection, yet both can cause mental confusion. And they are treated very differently.

 

[Tovah]

Thank you, Agility.

They've run cat scans and they say that no stroke is apparent. I think he needs an MRI, but I don't think they can do one for awhile after surgery.

Thanks, again.

 

[Jkm7]

I'd want to know what is their plan of care?
What does he intend to do for your DH, when, what does he expect each treatment to accomplish. What are his thoughts as to hope for improvement and in what length of time is it reasonable to look for improvement.

If that plan doesn't work, then what?
Will he consult with others in the field?
Has he seen this condition post op before? How much did the patient improve and what was their treatment?

I look here daily hoping to read a good report. You are doing a great job as your husband's advocate and your stress level has to be soaring. Don't forget to take care of yourself in the process.

 

[Sarah_Louise]

Thank you, Agility.

They've run cat scans and they say that no stroke is apparent. I think he needs an MRI, but I don't think they can do one for awhile after surgery.

Thanks, again.

After my last OHS i was confused, poor vision, twitching, numbness etc etc, they gave me a CT scan which sowed "abnormalities" and sent me straight for an MRI scan which showed i'd had several strokes, so he CAN have an MRI scan! I had mine about 6 days post op!
Really hope you get some answers soon,
thinking of you both,
Love Sarah xxxx

 

[Tovah]

Oh my gosh. To all of you, I give all my thanks.

My stress level is pretty bad, as today I thought we would finally see the neurologist and again, no.

My husband wants out of the rehab, and as I feel they're not doing well by him, I may have to just bring him home and try to care for him myself.

Very upset at the level of care at this point.

Maybe he'll improve just being home with me and his dogs; or am I deluding myself?

Sarah, how are you doing now? I'm so sorry to hear you've been through so much.

 

[Cyclemut]

He can have a low level MRI. I had an MRI and an MRA shortly after surgery, then later on a CT and a CTA scan, not to mention the TEE to make sure everything was still ticking.

Each time I've had confusion, talking funny (I don't know about swapping words or phrases, I was told I was slurring and not thinking rationally), sight problems and coordination issues (total of 4 times that I'm aware of) the longest it's lasted has been just shy of an hour (and we're guessing as to when the episodes started).

My wife found a couple of articles of micro-emboli, both gas and solid, causing TIAs, but I don't know how long a TIA can actually last. And if the scans show up normal, perhaps some other testing is needed.

 

[Tovah]

Again, I thank you.

We didn't get to see the neurologist, but we see his cardiologist tomorrow.

I'm so confused at this point, I don't know which way to turn.

Do you think I should just get him out of rehab and have the nurses come 3-4 X a week?

 

[escargome]

Tovah,
As much as this must be killing you, you really need to try a wait it out a little longer with your husband in rehab. His doctors NEED to give you a plan of action. Do you know which neurologist is supposed to see him? If so call that doctor's office and ask when he plans to visit your husband. Is the rehab doing anything to help him become a little more mobile and alert? Have you seen any type of mental improvement? When my mom was still living, she had two different episodes of extreme confusion after being hospitalized with CHF. While she was still in the hospital I would read the newspaper to her and ask her where she was and why? If she didn't know, then I would tell her what hospital she was in and a little about what had brought her there. If you husband will tolerate it, then try to challenge his mental status in small ways, like asking him if he can help you remember places you vacationed or something like that. You are still a wonderful advocate for him and I know you are doing the truly best you can. Keep up the good work.

 

[dhudson]

Tovah, I am in Arizona too. Tucson to be specific. I will be praying for you. What city are you in, just curious. If there is anything I can do for you, please feel free to contact me

 

[sarahsunshine]

I am really sorry to hear about your husband's situation and the lack of help and support you are receiving. Someone suggested it earlier, but I would contact the patien advocate and see if they can help. That's what they are there for. Don't feel bad about using them.

 

[Sarah_Louise]

On one hand you do really need to get a plan of action for your husband, yet on the other hand, sometimes being at home can help someone improve even more as they are in their own known surroundings, therefore leading to less confusion etc,
I'm still have neuro-physio each week, and i've been told i probably wont make a full recovery; got a patch in my eye i can't see out of, poor mobility, no balance, no consentration, no feeling in some limbs, i can't read properly and not takin things in 100% i use a crutch when walking small distances but a wheel chair long distnaces, yet i intend on proving docs wrong and improving
Make sure you explain all your concerns to his cardiologist tomorrow,
Hope you get some answers & a suitable plan,
Thinking of you and your husband so much!
Love Sarah xxxx

 

[Jkm7]

I agree your cardiologist appointment tomorrow is very important. You need to grab his attention and not let him wander out of the room until you get real information and care plan from him. If your DH's surgeon has released your husband, his cardio is likely 'in charge' of his case now.

What about his Primary Care Physician? Have you had contact with him/her? What are they doing to provide treatment?

You are being magnificent on your DH's behalf and this is when he needs it so much. The care he gets in the coming days/weeks is going to be very important IMO

We all send you the best possible wishes and hope you can return with continuing good news.

 

[Tovah]

I know that I need to be more patient. However, since day 3 I have BEGGED for a neurologist to work with my husband. If I try to work with him on his cognitive, he gets impatient. He doesn't want me in that role. He wants a specialist.

There has been improvement. He gets pt and ot and I think they really are trying.

I know that you're right about getting a plan of action and I will do that.

Can anyone tell me how a patient advocate works with you?

Sara Louise, you go and show them how wrong they are! I'll be cheering you on.

 

[escargome]

Tovah,
The way that the patient advocate worked for my husband and I, is that I contacted them, you can do this through the hospital. Patient advocate sits down with you and you can lay out what is making you unhappy about the care your husband has received/is receiving. The advocate then has the power to look through the records to see why they did what they did and try to mediate for you so that your husband gets the care you feel he should and if not the advocate need to explain why. Their title is just as it states "Patient Advocate". Give them a try, you should get some type of answer or result to your questions fairly quickly. God Bless You and Your Husband. I will keep you both in my prayers

 

[Tovah]

Thank you all!
Chris, I think I'm going to need an advocate. It's almost as though noone's taking me seriously and I wonder if it's because of the age difference between me and my husband.

Well, today we see the cardiologist.......

 

[Greg a]

Put as many of your demands/requests in WRITING and ask for a written response .....hard to play lip service to the written word,,,,,,,,,,,,,,,and you have a written paper trail that can be refered to and without threatening the suggestion of litigation real or percieved can work wonders ......ask for and collect email addies

 

[sarahsunshine]

Best of luck today! I think of you often.

My husband is also older than I (only 10 years), but I could see myself in your position several years from now. I am already in that position somewhat dealing with knee surgeons... Even though my husband is fine mentally. He just doesn't advocate for himself, know what the options are, or know who to talk to. I've already heard several times "He probably wasn't the right guy to talk to".. Yeah, but if you don't talk to this doctor, then how are you going to know who you do need to talk to and what your options are?

Please, advocate for yourself and for your husband. And if you need help doing it, PLEASE go to the advocate. They are there to help you.

 

[escargome]

Tovah,
I hope your meeting with the cardiologist goes well today and you get a plan of action that makes you and your husband both feel secure. As to the age difference, I say "posh!!!! to the fools" whether you are his wife, his friend, his whatever, you are there, you provide emotional support and advocate for him. They should respect that and address your concerns quickly and effectively. I have no patience for people who put others into pidgeon holes to avoid discussion or interaction. Keep hammering away at them and get that patient advocate. I will keep you both in my prayers.

 

[Lynlw]

I know that I need to be more patient. However, since day 3 I have BEGGED for a neurologist to work with my husband. If I try to work with him on his cognitive, he gets impatient. He doesn't want me in that role. He wants a specialist.

There has been improvement. He gets pt and ot and I think they really are trying.

I know that you're right about getting a plan of action and I will do that.

Can anyone tell me how a patient advocate works with you?

Sara Louise, you go and show them how wrong they are! I'll be cheering you on.

Would it be possible to find which neurologist is on staff there and call them yourself? He is at the rehab facility right? Is it part of the hospital system he was at or totally a seperate company? Is he getting PT/OT treatment daily? My other qustion is how is he doing medically, is he doing well enough medically he could be home and do the rehab as an outpatient or even in home or does he still need alot of care?