Feedback please - very worried wife.

[Natanni]

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]

How are things today?

How are things today?

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

 

[jcat2006]

update #2

update #2

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]

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]

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. I'm glad he's showing improvement. He (and you) continue to be in my prayers.

 

[Debster]

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

 

[Phyllis]

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]

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]

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]

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]

No post last night- has anyone heard anything?

 

[Karlynn]

No post last night- has anyone heard anything?

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

 

[PJmomrunner]

Hopefully no news=good news...

 

[hpuehler]

On my prayer list!

On my prayer list!

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]

Hope things are better

Hope things are better

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

 

[jcat2006]

tim update

tim update

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]

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]

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]

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]

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.