Feedback please - very worried wife.

[Mary]

I'm so glad that Tim is off the vent and is making progress.
Regarding the neurologist, I would tell the ICU Charge nurse to please place a note in his chart/computer that the patient's wife is very adamant about wanting to speak to the doctor. If there is a written request, it's much harder to overlook. I would also call his office and leave a message there.
Good luck,
Mary

 

[aussigal]

I was thrilled to read your post this morning...

have been thinking and praying for you guys since the beginning...

it sounds like he is on the right road to recovery now...


all the best and God Bless you both...

 

[LinPat]

Thanks for Update

Thanks for Update

Hi Jen

I was so happy to hear that Tim was off the ventilator. That is certainly a huge step in the right direction. I agree with everything Karlynn said re talking to the doctor. Another suggestion (my brother-in-law used this when talking with my nephew's neurosurgeon) was to tape record the conversation with the doctor. They throw so many things at you and I know I wanted to do further research about my husband's condition, but I could never remember what the medical terms were after the conversation was over. Otherwise, take lots of notes (and tell the doc to slow down so you can jot down all the info you want). The pain meds could definitely be causing his changed personality. I remember my husband was like a zombie for about two weeks and he really doesn't remember anything that happened during that time. Also, the patient does go through a sort of post surgery depression - be on the lookout for that. Make sure that you are taking care of yourself too - sleep and eat well. He will need you to be strong. Keeping you and Tim in our thoughts and prayers.

Lori

 

[PamO]

I've been waiting for news - this is great!

I'll echo Karlynn and Lori - I really like her suggestion about tape recording the doctor. I wish I would have done this with my husband's surgery. I think back now and I missed so much because all I could think about was what was on the cath lab screen (think the Prevacid stomach from the commercial masquerading as my husband's aorta). Luckily, we're friends with our cardiologist and surgeon so I was able to go over everything again. I would definitely try the tape recorder; I know how I am with taking notes, especially when I'm upset - very shaky.

The pain meds, anesthesia and all the stuff they've been pumping into him will definitely affect his personality and responses. It'll take some time. Plus, being on the vent for that long has gotta be tiring!

Good luck and keep us posted!

 

[Nancy]

Pain meds can cause many strange behaviors. Some people even have hallucinations. This will pass.

Part of any doctor's job when taking care of a patient is to communicate with you. You have every right to ask the nurse or secretary on the floor to page the doctor and have him call you back. It may not be right away if he isn't in the hospital, but he should be calling you fairly soon, if he is anywhere in the hospital. And he can speak with you at the nurses station phone. Some hospitals even have a portable phone you can use to speak with the doc, so you don't have to be uncomfortable talking at the nurses' station with everybody listening.

 

[KathyH]

I'm glad your husband is improving each day. It must be very difficult for you, but you have the right attitude. Positive thinking along with the prayers we are all sending your way will help you though this. Your husband has been through alot,so it will take a little bit longer to recover. Sending good thoughts your way.
Kathy H.

 

[ALCapshaw2]

Be sure to get COPIES of his entire hospital stay record. This should be available from the Hospital Records Office.
They may want to charge you $1 per page so ask to read it ALL first, and only copy what you need.

Keep after the Doc's until you get "the rest of the story".

Best wishes for your husband's continued improvement and recovery.

'AL Capshaw'

 

[KAJ]

Thank you very much for the update! I just returned home from a trip without access to the web. I wondered the whole time if Tim was gradually getting better. I prayed for Tim several times during my trip. I hope you get the answers to your questions soon!

Karl

 

[jcat2006]

thanks

thanks

Hi everyone - Thanks so much for your posts during this time. Tim is now in cardiac rehab and seems to be getting better each day! He is walking with a walker now and his personlaity seems to be slowly returning to what is was.

I am still getting mixed answers on exactly what happnened but I WILL get the entire story before he is discharged. I have been taking detailed notes of EVERY conversation I have with all the doctors and nurses. And I will request a copy of his records when all is said and done.

Thanks again. It has really hepled me to know that other people understand what I have been going through!

Jen

 

[aussigal]

GREAT news Jen...

please let Tim know we are still thinking of him

 

[Phyllis]

That's great news, Jen. Please give him our best wishes. I hope you get to take him home before long- along with all those hospital records.

 

[Karlynn]

Good news Jen! Make sure you are getting as much rest as you can - I know it's hard.

 

[Gemma]

Hi Jen,

It's great to hear Tim's up and about after the worrying past few days. I'm sure he'll get back to being the Tim you know and love as the drugs wear off - he's had not only the usual general anaesthetic but a lot more sedation than usual as he was on the ventilator for a while.

Did a search for neuroleptic syndrome which brought up lots of results - maybe you could do the same and see if any of it's relevant to Tim's symptoms. http://en.wikipedia.org/wiki/Malignant_neuroleptic_syndrome is the one I read, and seems to suggest it's caused primarily by antipsychotic drugs. If you go on to follow the antipsychotic link, it mentions that some of these drugs are also powerful sedatives - wonder if he had a reaction to something he was given during the surgery? Talking to the anaesthetist should give you the answer - perhaps he can compare the list of drugs Tim has been given whilst in the hospital (before, during and after surgery) with the list that's known to cause neuroleptic syndrome?

One good thing I gleaned from the wikipedia document is that re-introduction to the drug which caused the syndrome doesn't usually cause a recurrence, and the symptoms usually last between 8 and 40 days. So I guess if the diagnosis is correct, the doctors were right that it will rectify itself given time.

Hope you get some answers and Tim gets to go home soon,

Take care of yourself too,

Gemma.

 

[hensylee]

drugs can be awful. I hate that one where you push the button - it kept me so drugged I wanted to die; then told the dr that drug should be banned. I am sure he didn't listen.

It's good news that you have your husband back in the world again. You are so tired; we can hear it. I wish you all the good luck in getting him back to his old self. Also in getting his hospital records. Shame that CYA is part of the hospital mode; they should just be open about everything.

Keep on keeping on. God bless.

 

[PJmomrunner]

Jen-

I'm delighted to hear Tim's up and walking, even if he is using a walker right now. I think Gemma's on the right track. May his recovery is steady and complete!

 

[Randy & Robyn]

Very glad to hear your husband is doing better. It should be all downhill from here.

I'm not one to suggest medical malpractice lightly but your situation sounds very suspicious. All of the information I can find on neuroleptic syndrome indicates it can only be caused by withdrawal from anti-psychotic drugs. I would surmise that Gemma may be right and they gave your husband something during the surgery that he had an adverse reaction to.

If the drug he reacted to was one commonly used for open heart surgery then it was an unexpected, unfortunate and rare occurence that could not have been prevented. If, on the other hand, a mistake was made and the wrong drug or wrong dose of the correct drug was administered you have every right to be told about it.

The fact that the doctors you have talked to are reticent to discuss the matter openly with you furthers my suspicions.

I would definitely fill out a release request for your husband's records, especially the surgical report.

Take care,
Randy

 

[Barbara Stewart]

Tim' surgery

Tim' surgery

I've been thinking about you and Tim while in my own self involved state. I am so glad to hear he is doing better. He sure is lucky he found you!
Barbara

 

[joanne6]

Thanks for posting and keeping us up to date. I think we all tend to worry when we don't hear anything for a while. Glad things are getting better. Sounds like you both have been through a rough time. Hoping each day things will get better.

 

[dbuenting]

Hi everyone. I am so sorry I have not posted an update until tonight. As I am sure you can imagine I have been so tired and cannot even log on to the computer after getting home at night from getting home from the hospital.

Tim?s ventilator was finally turned off on Sat. morning and I was able to talk to him for the first time in 4 days! He was moved to the post op unit of the hospital yesterday. His left lower leg is still not moving but the neurologist expects this will come back and that Tim will be in inpatient cardiac rehab for a week, but that really depends on the progress he makes this week since they are also going to be rehabbing the leg throughout the week.

The doctors tell me this is totally normally for all he has been through, but Tim?s personality is just not the same since he has woken up. He is being meek, passive and almost childlike and does not seem to be very upset that he is unable to walk. I have explained to him what has happened in the last 6 days and he seems unfazed. Its very bizarre.

It terms of what actually caused this ? today the doctors are telling me it was not a stroke and that it was neuroleptic syndrome. Well, I should correct that when I say the doctors told me this because it was a nurse practitioner who told me, who was told this by a neurologist. She told me I could talk to the doctor at 3:30 today and to call him but he was unavailable to talk when I called. So tomorrow I have to get to the hospital early so I can track this guy down. That seems to be the story of my life ? stalking doctors at NYU medical center to find out what exactly happened to my husband during this surgery that he is now unable to move his lower left leg. Also, its very odd they are telling me that this syndrome is the cause of Tim?s symptoms because has never taken any of the drugs that they have told me cause this when used with anesthesia.

The most important thing is that he is getting better of course but I really would like to get a straight answer on what went wrong. For 3 days last week they were telling me one thing and now that has changed. Tomorrow is a new day so I am sure I will find out more.

I will continue to post about this and let all know what exactly what happened when I get a clear answer.

THANK YOU ALL SO MUCH FOR THINKING OF TIM. J

I am very happy to hear that he is awake and up. You have both been thru alot, I pray that given time he will be back to himself. I know what you have been thru, as I have been there recently myself. I was also in circulatory arrest and I know it is scarry. Hope you get some answers soon.

 

[Marguerite53]

My goodness! You and your husband are having quite a journey of this. And through it all, you have remained level-headed and clear thinking. He is very lucky to have you and I'm sure that once he realizes just how lucky, it will be quite an emotional moment for him!

Wishing you continued success as he hopefully now speeds on to complete recovery!

For those of us still waiting for our procedures, this thread has been an eye opener to possible setbacks and also a testament to the strength of love!!

Thank you for sharing.

Marguerite