Feedback please - very worried wife. [Archive]

jcat2006

January 18th, 2006, 09:18 PM

Hi all. My husband had surgery to replace his ascending aorta yesterday (1/17). He is 30 years old and this is his third surgery. The first was in ’77 to fit an aneurysm between the chambers of the heart and to repair his aortic valve. The second was to put in a st. jude valve in ’95.

I was told the surgery went well, but he is still in the critical care unit, cannot breath without a ventilator and was not responding to neurological tests as of this afternoon.

I was told that since he was in circulatory arrest for a time while they replaced the aorta that it takes some people a while to get all functions up and running.

When I saw him today at 12pm today (eastern time) he was only moving his right side and was only sort of responding to my voice.

I was told that his heart, lungs and kidneys were functioning well. He was running a 101 fever when I left today at 8pm.

The reason he is still on the ventilator is that they are not sure if he can breath on his own since the neurological functions do not appear to be okay.

I did confirm with his cardiologist that he did not have a stroke.

Can anyone tell me his or her experiences with aortic aneurisms so I can see if you have heard of this type of difficulty after surgery?

I am very scared and the doctors just say “we have to wait and see”

PS – none of his doctors told me that there was a chance that he had to go under circulatory arrest, this detail was left out of the details of what he was having done. I only though that he would be put on the heart lung machine.

geebee

January 18th, 2006, 09:32 PM

I will be praying that all goes well for your husband.

I cannot answer what is done for anuerysm repair but I am sure you will hear from some who know.

Each surgery is harder and usually does require additional time for things to get better. I do not think it is unusual for a person to still be on the respirator after 1 day. I would be concerned also about the talk of neurological issues but at least you are getting information.

Stay on top of the doctors and make sure they answer your questions. Don't let them leave it at, "we have to wait and see" if you are still unsure of what it going on.

PJmomrunner

January 18th, 2006, 09:50 PM

I have no first hand knowledge, but since I am "in the waiting room" for a valve and ascending aorta replacement, I have researched the procedure enough to know that total circulatory arrest is a pretty common, and perhaps preferred, way to perform the procedure. According to the Cedars-Sinai website: "At Cedars-Sinai Medical Center, the total circulatory arrest technique has been used since 1994. This technique has minimized the risk of embolization while also providing maximum spinal cord protection. Through the use of this technique, renal failure was totally eliminated, and the risks of paraplegia and postsurgical mortality dramatically reduced." They also mention that because the aorta is not clamped, the possibility of damaging the aorta with the clamps is eliminated.

I hope this helps. I can only imagine how worried you must be. Hang in there.

BDMc

January 18th, 2006, 11:00 PM

I was under the impression that while the heart was disconnected, the heart lung machine was doing it's job. I don't see why he should have suffered a lack of oxygen to his brain...? Please keep us posted, and know that I will keep you both in my thoughts and prayers. Brian

Karlynn

January 18th, 2006, 11:01 PM

Your husband is in my prayers.

It is only 1 day post op for someone who is on his 3rd surgery. Additional surgeries are more difficult and he may take more time to respond. I'm sure this 1st day has seemed 100 hours long.

knightfan2691

January 18th, 2006, 11:06 PM

jcat,

While I don't have information/details relative to your husband's specific condition, I can tell you that, in a way, it is nice to know that I'm not the only one that was not "woken up" after surgery the same day.

My last surgery (my third) was done January 6, 2003 (Monday). They did not even try to wake me up until Tuesday afternoon.... And, I wasn't fully awake until Wednesday.

Hope that gives you some hope and encouragement.

Thoughts/prayers coming your way....

Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Enough is enough, I can't take anymore" ... Alabama ... 'Can't Keep A Good Man Down'

Phyllis

January 18th, 2006, 11:16 PM

jcat, I wish I could add something to relieve your fears tonight, but I think you should concentrate on the fact that his cardiologist said he did not have a stroke and that it does take longer to recover after multiple surgeries. We are praying that these neurological complications are temporary and that you will see a big change for the better tomorrow.

KristiinSD

January 19th, 2006, 12:42 AM

to wake up...It's much harder for you who don't have the surgery to watch us struggle with regaining consciousness. Apparently it took me some time to get off the vent because of arousal problems. My friend said I had to be able to follow 5 commands and I would follow a few and then drop back off. When she finally got me to do 5, the nurses wanted me to do tricks for them and I guess I fell back off again. I don't remember anything but my friend's smiling face, the surgeon stroking my cheek, and waking on Thursdsay with another friend there!

You and your husband are in my prayers for a good recovery!

Kristi
mitral repair 11/30/05

Nancy

January 19th, 2006, 08:12 AM

As the wife of a guy who has had 3 valve surgeries, I can tell you that Joe did take a long time to wake up. I can't remember exactly, but think he was on the vent for at least 24 hours.

Everyone is a little different in how they handle anesthesia and how long it takes to wake up and be able to breathe on their own.

Can't vouch for this, but I'm willing to bet there are different anesthesia meds used for different procedures, and also different strengths depending on what they have to do when in there.

Don't panic. Please keep positive thoughts. Joe has scared me on many occasions, and sometimes his doctors too.:)

But eventually he did wake up.

Gemma

January 19th, 2006, 08:56 AM

Hi jcat,

It sounds from what others have said that this is as much to do with it being your husband's third surgery as anything, and that it isn't that unusual. Scary though I know.

It's entirely possible that the "neurological tests" they're performing is just a fancy way of saying they're seeing if he's alert enough to remember to breathe on his own yet, and the time it takes people to wake up from the anaesthetic does vary a lot. I remember being really freaked out in ICU because the nurses were all walking by my boyfriend Jim's bed and whispering about how a person his age (26 at the time in 2003) should be more awake by now and they should be waking him up more and getting him off the vent. Scary at the time but it all worked out OK in the end and a few hours later he was breathing on his own again. Of course, Jim had already told me he slept for days after having his tonsils out a few years before, so I suppose we shouldn't have been surprised!

Hang in there, there are lots of prayers and positive thoughts coming your husband's way. Hope you'll be back with good news soon.

Gemma.

PapaHappyStar

January 19th, 2006, 09:00 AM

Hope things are better for your husband,

Perhaps the slow neurological progress may be a positive sign since total circulatory arrest is accompanied by inducing deep hypothermia ( they cool the brain down to slow chemical and neurological activity and reduce the demand for oxygen ). You may liken it to waking up from deep hibernation ( like a polar bear ).

At 30 I think he has an excellent chance at getting through this very well. Hopefully you've already seen some improvement.

All the best,
Burair

LinPat

January 19th, 2006, 10:27 AM

Hi Jen

Just remember to take it one day at a time. When my husband had his ascending aortic aneurysm repair in 2004, it was his third open heart surgery and he has had many other major surgeries also. He was very slow to come out of the anesthesia. He was not taken off the ventilator until the next day. The nurses kept testing him to make sure he could maintain his oxygen levels once he was taken off - he would have two or three good tests and then take a step backward. He was in the critical care unit for 7 days. I was told that for each major surgery under anesthesia it takes longer for your body to come out of it. He had other systems that were slow to recover as well, especially his bowel system. He had, and has continued to have from time to time, numbness in his neck, hands, feet. I think that it's really good news that the doctor said he did not have a stroke. Just keep talking to him, I know he can hear you. Ask questions if you aren't sure about anything. My husband was in the hospital for 17 days, and by the end of the stay, I became much more bold about asking the doctor to explain everything.
I will keep you and your husband in my thoughts and prayers. Hang in there.
Lori

Geo

January 19th, 2006, 12:17 PM

JACT,

I am sorry that you and your husband are going through this. Just wanted to let you know that you are both in my thoughts and prayers.

George

Georgia

January 19th, 2006, 12:36 PM

Jen, I'm so sorry you have to go through this. My hubby wouldn't even talk about coming to cicu for months - he was really traumatized. Bless you poor relatives and significant others. At least those of us having the surgery sleep through it all.

Please know you're also in my thoughts and prayers. And please let us know how he's doing.

DinahS

January 19th, 2006, 06:05 PM

Bless your heart. You are in my prayers. I just had surgery on Wed, Dec. 28th and I came off the vent early am the Friday morning (30th). My mom and husband still had to keep waking me up and telling me to breath even after I came off. They just left me on it longer b/c I didn't want to wake up and breath on my own yet. My husband was going nuts. I was sleeping soundly though and I don't remember a thing which is what I requested. hehe!

I am at home now and went back to work half days today, and everything went smoothly in the hospital. I am feeling great now.

Just hang in there and know that prayers are lifting you up.

God Bless You and keep us posted.

Cris N

January 19th, 2006, 07:22 PM

As the others have said, everyone reacts differently to the waking up process. I hope by now you've had some positive signs to help relieve your worries. I'm keeping you both in my prayers.

Cris

jcat2006

January 19th, 2006, 09:09 PM

Hi all and thanks for your thoughtful responses.

My husband is doing better today, but is still on the ventilator (day #3). He had a 104-degree fever over night and he was having convulsion like tremors throughout the night. They gave him a cat scan today to see if they can see if he had a stroke. Apparently they changed their mind over night about if he had a stroke or not.

They are also trying to figure out why he would be having these tremors and such a high fever only two days after surgery (apparently this is abnormal and if a fever occurs it is unusually a week or two after surgery)

Today he seems to have shown some progress in his motor function, especially in this left side, which showed no movement until today. His fever is now 101 and his tremors seem to have gone away. We hope this continues throughout the night and that the CAT scan shows that he does not have any neurological damage.

I am feeling much more hopeful than I have in past days and I think, as most of you are saying, that it will just take time.

geebee

January 19th, 2006, 09:24 PM

Happy to hear things are a bit better. I am sure this trend will continue. Also, how many times in our life do we get to be so lazy we don't even have to breathe for ourselves? ;) It was not until my third OHS that I appreciated the fact that I didn't have to do ANYTHING for the time I was on the ventilator.

I hope your husband is relaxed and not fighting anything.

Maybe the shaking is a side effect of the anesthesia. Our bodies do some really strange things getting rid of that stuff.

Please keep your chin up - things will improve.

joanne6

January 19th, 2006, 09:55 PM

Just wanted to let you know that you and your husband are in my prayers. Each day should tell a little more of the story. Hoping tomorrow you will have good news to tell us.

Phyllis

January 19th, 2006, 10:43 PM

Thanks for taking the time to update as we have been worried about you both. I'm glad to hear of the improvement and that you are feeling more hopeful as well. Still sending our prayers and best wishes your way.

Natanni

January 20th, 2006, 08:51 PM

Hello!

Wonderful news that your husband is getting better. Please keep us posted on his progess. I don't post often, but we check the boards twice a day, and have been watching your story!

My husband's (34 yrs) story is a little different, he had AVR with a mechanical valve Sept 29th, 2005 following endocarditis in July. He did run an immediate post op fever, around 100 to 101, and I was completely wigging out because I was so worried the endo was back, and attacking his new valve. The nurses at the time (he was still on the vent) assured me it was normal to have this low grade temp immediately post op. But 104, wow. That is high. Take care, you guys are in our thoughts...

joanne6

January 20th, 2006, 09:21 PM

Just wondering how today has been.. You and your husband are in my thoughts and prayers. Please let us know how things are.

jcat2006

January 20th, 2006, 09:58 PM

Hi all! Here’s an update,,,

My husband is doing better today, but is still on the ventilator (day #4). His fever is down to 100.4 and the tremors have stopped. The results of the CAT scan came back and it did show some areas of the right part of the brain that indicated there was a “problem” during the surgery. But, his left side is moving now so the doctors believe that whatever the problem was it is getting better.

Unfortunately, he is still on the ventilator, but they are going to try to take it out tomorrow. It’s so sad to watch him struggle when he is not sedated. He is constantly trying to get his hand loose (they had to tie it down) so he can take the tube out of his mouth. He is also biting the ventilator tube and that is preventing enough oxygen coming into his lungs.

But it looks like things are getting better which is great! And hopefully tomorrow the tube will come out and the doctor will have a better idea of how extensive the neurological damage is. However, they do believe that whatever damage occurred, that it could be temporary and/or helped by cardiac rehab.

Thanks for all your thoughts and prayers. It seems like it will be a long haul for Tim ahead but he will get through it.

PJmomrunner

January 20th, 2006, 10:12 PM

Thanks for the update. It's kind of weird how much I can worry about someone I've never even met.... This is good news...perhaps even his apparent frustration with the tube is a good sign.

With prayers and loads of positive thoughts,

Karlynn

January 20th, 2006, 10:19 PM

Believe it or not, the fact that he wants and tries to rip the ventilator out is a good sign. I had my hands tied down too.:o I'm glad he's showing improvement. He (and you) continue to be in my prayers.

Debster

January 20th, 2006, 10:59 PM

Wonderful! He sounds like a fighter-woohoo!:) You both are in my prayers...please keep us updated! Debbie

Phyllis

January 21st, 2006, 07:31 AM

Thanks for the post- I know how exhausted you must be. Hoping the ventilator comes out today and that each day brings more good news.

hensylee

January 21st, 2006, 07:46 AM

hoping today is another day of better news and a little rest. You have many of us looking in to see how things are going - and saying prayers. Blessins.....

Gemma

January 21st, 2006, 08:00 AM

Sounds like things are getting better day by day. Great news!

Like Karlynn said, it's good that he wants the vent out - I suppose there's a tricky balancing act between getting him alert enough to breathe on his own but convincing him to keep the vent in until he convinces the nurses that he can breathe! Hope he gets it out today and will probably say he's desperate for a drink!

I'm sure cardiac or some other form of rehab will help with whatever damage occurred during the surgery.

Take care of yourself too - try and get plenty of rest if you can.

Gemma.

KAJ

January 21st, 2006, 08:22 PM

I am very glad to hear your husband is gradually getting better. I read about your husband shortly after your 1st post. He has been in my thoughts and prayers since that time. Please try to get some rest yourself.

Take Care and God Bless,
Karl

Phyllis

January 23rd, 2006, 06:52 AM

No post last night- has anyone heard anything?

Karlynn

January 23rd, 2006, 08:54 AM

No post last night- has anyone heard anything?

I keep checking back here too. Hoping things are still progressing well.

PJmomrunner

January 23rd, 2006, 08:59 AM

Hopefully no news=good news...

hpuehler

January 23rd, 2006, 03:30 PM

I have read your story of your husbands recovery. I will add you to my prayer list and hope to hear an update soon.

Heather;)

joanne6

January 23rd, 2006, 08:20 PM

I also am concerned that we haven't heard anything. Hoping someone will post soon.

jcat2006

January 23rd, 2006, 09:09 PM

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

geebee

January 23rd, 2006, 09:17 PM

I am happy to hear your husband is off the ventilator - that always helps.

His personality issue could be a result of the drugs he is on - pain meds can really cause people to act strangely.

I think you are definitely owed some explanations. They can throw all kinds of terms at you but explanations are much more helpful. Stay after the doctors to get your answers.

I hope the rehab helps and things are much better very soon.

PJmomrunner

January 23rd, 2006, 09:39 PM

I'm so glad to hear your hubby's off the ventilator. That's got to be a big relief. I'm also glad they're telling you the leg issue is temporary, although I'm sure it's frustrating to not have a definitive explanation for why he's having the problem...can you talk to the anethesiologist? It would seem he/she'd be the best source to ask about any drugs he had during surgery and whether they'd react with anything already in his system or added post-op.

It sounds like Tim's got a terrific advocate in you--asking all the tough questions and pursuing the answers. Hang in there.

Karlynn

January 23rd, 2006, 09:50 PM

I'm sure you are physically and mentally exhausted and we really appreciate you taking the time to give us such a detailed update. Good news that Tim is off the ventilator. If you feel you are having too hard a time getting a hold of doctors, see if there is a patient advocate in the hospital that you can have assist you with this.

Do you have a little notebook that you can jot down questions as you think of them? In your situation, it can be very hard to try and recall all the things that you question.

Continuing to pray for both of you.

Phyllis

January 23rd, 2006, 10:00 PM

Thanks so much for posting - we are all relieved to hear that Tim is off the ventilator and that things are improving. Karlynn's suggestions are all good ones- keep pressing for answers to all your questions!
We will pray for Tim's continued improvement. Please remember to take some time for yourself- he's going to need you in good shape for his recovery.

Mary

January 23rd, 2006, 10:14 PM

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

January 23rd, 2006, 10:39 PM

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

January 24th, 2006, 10:14 AM

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

January 24th, 2006, 10:28 AM

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

January 24th, 2006, 11:43 AM

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

January 24th, 2006, 08:01 PM

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

January 24th, 2006, 11:37 PM

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

January 25th, 2006, 03:24 PM

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

January 25th, 2006, 11:27 PM

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

January 25th, 2006, 11:37 PM

GREAT news Jen...

please let Tim know we are still thinking of him

Phyllis

January 26th, 2006, 07:49 AM

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

January 26th, 2006, 08:02 AM

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

Gemma

January 26th, 2006, 08:53 AM

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

January 26th, 2006, 09:15 AM

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

January 26th, 2006, 09:31 AM

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

January 26th, 2006, 09:32 AM

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

January 26th, 2006, 05:16 PM

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

January 26th, 2006, 08:36 PM

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

January 26th, 2006, 09:28 PM

Marguerite53

January 27th, 2006, 10:11 AM

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

PamO

January 27th, 2006, 10:36 AM

Anti-psychotic drugs? That sounds very suspicious. Is there any reason he would have been given these before or during his surgery? Neuroleptic episodes - can they be caused by anything else besides this?

Definitely get the anesthiologist's records/charts to see exactly what he was given.

I am so glad things are looking up and you're seeing glimpses of his old personality. It will take a while, but things sound good! Keep us posted.

Gemma

January 27th, 2006, 10:54 AM

Anti-psychotic drugs? That sounds very suspicious. Is there any reason he would have been given these before or during his surgery? Neuroleptic episodes - can they be caused by anything else besides this?

From the link I posted earlier:

"CAUSES

NMS is caused almost exclusively by antipsychotics, which includes all types of neuroleptic medicines along with newer antipsychotic drugs. The higher the dosage, the more common the occurrence. Rapid and large increases in dosage can also be attributed to the development of NMS. Other drugs, environmental or psychological factors, hereditary conditions, and specific demographics may be at greater risk, but to date no conclusive evidence has been found to support this. The disorder typically develops within two weeks of the initial treatment with the drug, but may develop at any time that the drug is being taken. NMS may also occur in people taking a class of drugs known as dopaminergics."

(NMS is neuroleptic malignant syndrome - which is all that turned up when I googled neuroleptic syndrome so presumably the same thing)

All sounds a bit weird to me too. The "Rapid and large increases in dosage" bit is what made me wonder if he was given something recently...

Incidentally, I did Psychology at high school and vaguely remember dopamine is something to do with mood, so dopaminergics are maybe some type of anti-depressants??? Don't quote me on that though!

PamO

January 27th, 2006, 03:52 PM

Other drugs, environmental or psychological factors, hereditary conditions, and specific demographics may be at greater risk, but to date no conclusive evidence has been found to support this.

So, even though "...no conclusive evidence has been found to support this..." I take this to mean just about anything, although we can't prove it!

jcat2006

January 27th, 2006, 11:20 PM

Hi all,

Thanks so much for the info on the narcoleptic syndrome. I agree with those that have posted that it seems a bit fishy that this is what he had especially since I found out today that he only displayed a handful of the symptoms you have when suffering from neuroleptic syndrome.

Also, since I last posted I have found out that the panels of doctors on his case are all not in agreement with what exactly happened during the surgery – His primary cardiologist said there is an “intellectual debate” on what exactly happened. His primary cardiologist and the cardiologist at his rehab center do not think he suffered from neuroleptic syndrome, but his neurologist thinks that he did. The two cat scans they gave Tim show no signs of a stroke, but his rehab cardiologist does not always go by Cat scans because they don’t always tell the entire story and eluded to the fact that he thought Tim had a stroke, but did not want to “second guess the neurologist”. His primary cardiologist just seems to thinks that there was a problem with blood flow while he was on the bypass machine and has the attitude that he is getting better so who really cares what it was. Of course he did not actually say this to me but as he rushes me off the phone when I am trying to get answers from him this is the feeling I get.

As it stands now Tim is in cardiac rehab and he is getting better each day. He is slow in his thinking processes and physically (still can only walk with a walker), but the doctors are optimistic that he will make a full recovery, but it will take a lot of time.

I will keep pressing for a clear answer on what happened and when find out I will share with this group. I really want to make people aware that they need to ask questions before surgery. Having never had anyone in my life have major surgery I was not as proactive as I should have been in getting a clear picture of the risks. Part of this was that I did not want to scare my husband, when he obviously needed to have this surgery in order to survive and detailed risks would have only made him more petrified that he already was.

I just can’t wait until he is home, its very lonely here without him. He is encouraged by a psychologist ay the rehab center to write down his thoughts in a journal. Today he wrote – “I miss my cats and want to be able to sleep next to my wife”. It is not as well written as it normally would be but it was just so heartbreaking to read. He just wants his life to back to normal even though he cannot fully articulate it yet.

Thank you all again you really have been a great support!!!

BDMc

January 27th, 2006, 11:30 PM

I think of you two every day. I hope his recovery gains momentum, and you see signs of his return to his old self. Brian

Karlynn

January 27th, 2006, 11:35 PM

Sending you a big hug and God bless you for being such a devoted loving wife. You are going through tough times, but life will be sweeter and much more appreciated than the average couple your age can fathom. My husband and I went through some struggles because of my valve troubles when I was in my 20's and we both remember so well all the "would 'a, could 'a, should 'a" feelings we had then. Hind sight is 20/20 - you are doing an incredible job of coping, acting responsibly and being diligent throughout this experience.

I'm very glad that there is a psychologist seeing your husband in rehab. Depression is very common afte open heart surgery and when a young, vital person has the speed bumps that your husband is experiencing, it can heighten that depression.

Make sure you are taking as good care (or at least half-as good) of yourself, as you are your husband.

You both remain in my prayers.

geebee

January 28th, 2006, 12:02 AM

Jen,

I think Tim's writing about missing his cats and wanting to sleep next to you says it all and actually brought tears to my eyes. You are right, he just wants things back to normal (whatever normal is);) ;) .

Rehab will make a world of difference and I am sure he will improve daily.

He is very lucky to have someone so devoted looking after his interests and providing such obvious love.

I am praying for you both.

Blanche

January 28th, 2006, 12:56 AM

Jen:
My heart is there with you as you get through this stressful time. You have all of my hopes and wishes for an early reunion with your dear one, who will need much understanding and your love and patience. The most important thing that you MUST do now is take care of yourself. You must eat well and regularily, sleep, exercise and do all the things necessary to keep you at your best. Your husband will need you and you need to prepare for his homecoming by being in as good a shape as possible.

My husband had a stroke in 2000 and was hospitalized for nearly five weeks. It is so hard to maintain a balance when a loved one is in crisis and in hospital.

Kind regards,
Blanche

Phyllis

January 28th, 2006, 07:09 AM

Praying for both of you that he will be home soon. I can imagine your frustration with the conflicting information you are getting. Just concentrate on caring for your husband and yourself for now, but be sure to get a complete set of records when this is all over and you have the time and the clear mind to go over everything and see what you can discover.

hensylee

January 28th, 2006, 07:17 AM

This has been heartbreaking. We are a support as much as possible, but there comes a time when we are at a loss, too. This is one of those times that we just don't what's happening, like you. I hope at least one of those doctors can give you the real scoop that is needed for the recovery of your husband. If they don't know, they need to find out. You certainly have many people here watching and hoping for some good news and that you will be able to get him home in his proper setting. That will probably help him as much as anything. Home is our root and we need to be there. We are here, we care and we are reading all that you write. God bless.....

LinPat

January 30th, 2006, 12:26 PM

Hi Jen

It sounds like Tim is making improvements every day. It's so hard when the improvements don't seem fast enough to get them back to where they were before. You have to celebrate each step taken, no matter how small they may seem to others. I agree with the other posts that you don't seem to be getting all the info you need. Have you tried to talk to the patient advocates at the hospital - sometimes they can be helpful in getting copies of the records. I remember that I didn't really research the risks when Mike had his surgery and only found out afterward. However, that didn't change the fact that he had to have the surgery to survive. You most likely would have made the same decision, even if you had researched it more. Don't feel guilty or responsible - Tim is very lucky to have you in his corner.

Keeping you and Tim in our thoughts and prayers - stay strong!

Lori

aussigal

January 31st, 2006, 06:05 AM

Tim & Jen...

Your'e still on the prayer-list...

God Bless you both...

good to hear each day is bringing an improvement

cassidy183

February 3rd, 2006, 05:26 PM

Today I came home from my 2.5 week in the hospital and cadiac rehab. We are very happy but there is stll a way to go but I am looking forwardto getting back to normal

PJmomrunner

February 3rd, 2006, 05:37 PM

WELCOME HOME TIM!!!

All the best to you as you get better and better one step at a time!

Karlynn

February 3rd, 2006, 05:48 PM

Wow - HOME - congratulations!

So good to see you post!

Granbonny

February 3rd, 2006, 06:54 PM

Glad to see you post..means things are going a little better.:) Now, rest, nap and try a little walking in the house. Remember..1 day at a time...:) and you will be back in the real world soon.:) Bonnie

Praline

February 3rd, 2006, 07:50 PM

Glad to hear that you finally got home!!! I had surgery January 18 and did not get home before Sunday, January 29. I had an episode with "Ventricular standstill" where my one of the ventricles in my heart just top firing for about 4-5 beats. Sent me back to ICU for a few days with a temporary pace maker. Doctors( cardiology people) debated whether to put in a permanent pace maker but my surgeon insisted on waiting and my heart finally got back to sinus rhythm on its own. I still have AFib but they are just waiting ...
I wish you an uneventful recovery from now on. I am sending prayers and positive thoughts you way.