[reallynewatthis]

Hi all - I posted in the '36 hour' thread that my husband has taken a real downturn and the doctors don't know what the problem is. He is unresponsive to light and pain with rhythmic jerking motions of his arms.

I couldn't be at the hospital today, so I left a note asking the weekend doc to call me and discuss the situation.

His mom went to visit him today and was there when the doc breezed in for rounds.

Instead of calling me, he had a chat with his mom and then got the heck out of there.

Here is her version of what the doc (not even his regular neuro, just the weekend guy) said:

"Oh, he likely has brain damage from oxygen deprivation. It only takes a couple of minutes. Don't worry though, they'll take care of all of that in rehab because he will grow new nerve endings. They are giving him the best antibiotics there are!"

She was laughing when she told me this on the phone because my husband had just stuck his finger in his eye. There was a whole mess of family there today and they just think things are hunky-dorry now because 'rehab will fix all of that . . . '

"Oh look, he's yawning . . . how cute it that! The tech said he smiled when she suctioned him! Well, he's just so much better today!" (at 10:00 AM the nurse had told me 'no change')

I'm not laughing . . .

I am so furious at this doctor I can't even speak, let me count the ways:

1. Not returning my call and having that breezy discussion with me first.

2. Making a hallway diagnosis when they haven't even seen the latest round of tests (ie - the EEG)

3. Having that conversation with his mother without talking to me first.

4. Making potential hypoxic brain damage into nothing more than a nanny-nanny-boo-boo that just needs a band-aid.

5. Not having a discussion with me about how this oxygen deprivation might have occurred since he has been intubated and/or trached since 24 hours after his fall.

6. Making the first time I hear about this 'diagnosis' be when I talk to his mother while she is at his bedside.

Yes, I know phenomenal things, including miracles, can happen in rehab. I pray 100 times a day that this is what happens. I also know that according to the articles I've read his current condition meets the criteria from a persistent vegetative state and after 3 days of that up to 75% of patients don't make any significant recovery of function. That drops off even more if the patient is older than 25. My husband is 48.

I've been trying to prepare his mom for just how serious this situation may be so that if things work out we can be thankful, but if things don't work out that there isn't a lot of 'but the doctor said everything would be all right!!!'

I have to work again tomorrow, but I am leaving a message for his primary physician that I had damn well better get a phone call. If not, my visit on Tuesday won't be quite as pleasant as they have been.

Think I'm overreacting?????

This post has been edited by reallynewatthis: 13 December 2009 - 11:51 PM

[Maltese Cat]

no way are you overreacting. Yes, doctors lead horrendously busy lives, and keeping track of patients families as well as patients is pretty tough. But you NEED to know what is going on, and sadly if is often only by nagging as much as possible that you are able to get them to take you seriously and COMMUNICATE! you keep fighting!

[reallynewatthis]

Thanks Cat! Just typing it out kept me from getting in the car and driving the 70 miles to the hospital. I have to work tomorrow to keep my job.

It's also that he dosed his mom with that breezy bologna without having all the facts. Three weeks of me having to be the voice of reality was undone in about 3 minutes.

Oh yeah . . . fight . . . I can do that!

[Maltese Cat]

also, i would try not to worry too much about being the voice of reason for his mum. She may have her own reasons for insisting on believing its all going to be fine, and if the worst happens, then she's going to suffer a shock whether you have prepared her for it or not.

Concentrate on yourself and how you feel about it. Trying to fight for him, and fight for you, and fight for his mum too is a lot to handle. Focus on the important people in this - you and him.

[reallynewatthis]

As always,

everything I need to know in life, I've learned from a cat . . .

including how to hiss and scratch at doctors . . .

[Martha]

Hi...

Im very new to this website, and my experience is different from yours, though I recently went through something similar. I found the whole "miracles can happen" thing to be very difficult to swallow. I know that they say that to keep morale up, and I know that they really do happen. It made me feel very hopeless and sad to hear it. I prayed constantly. I am praying for you now. I hope that you and your family's lives get easier and that you find some peace and some days that are free from anxiety.

-Martha

ps-I really think it is usually the wives (and the patient) who are the most realistic about the situation. Why is that?

This post has been edited by Martha: 14 December 2009 - 01:09 AM

[Tetracyclone]

really new,

I'm sending energy, as can't bring soup or sue your employer who should be giving you family sick leave.

In 07 when I camped out in the hospitals and rehab center with my Dad I learned the only way to speak to most doctors is to be in the room when they come in. Massachusetts General Hospital was the exception. A very few institutions maintain an amazing ethic of centering on patient and family, no matter how old the patient or how bleak the situation. you are unable to be there, but given who you are, you may win the loyalty of someone key in the situation. You are one to keep your wits about you, so the only trap is if you tell yourself human beings should be caring. Its a crap game.

[reallynewatthis]

Thank you Martha and Pwuff. After the weird phone call with his mother about his supposed 'improvement' and how all would be fixed in rehab, I waited a couple of hours and spoke to the night nurse. After ascertaining him mom had left, I asked to be frankly told how he was doing. After some hemming and hawing and double checking that I had the proper patient info password and that my phone number matched the one in his chart . . .

Her response: "No change, no purposeful movements, no response to external stimuli, fever is up, and his lungs sound bad . . . "

I thanked her for that. I fear pneumonia and a vegetative state a LOT more than I feared the wheelchair, but I need to know what is going on so I can make the best decisions for his care.

Thankfully, my job has been wonderful, but there are a few places where they just can't give. I am an attorney and we had a docket with 100+ cases on it this morning. I am under contract with the county to provide criminal defense services and I had an ethical obligations to my clients. Other than these huge dockets (another one on Thursday), the judges and clerks have been awesome about letting me dump and/or rearrange cases to suit my schedule and my colleagues have covered for me. My other job is the company I run with my husband and it is Christmas, our busiest time. I need to get the orders billed and shipped to have a small cash cushion for the winter business crash. Usually it is two of us doing this work, this year it is just me.

I'll be there tomorrow and I will be stalking neurosurgeons to find out the results of the EEG. Will post more then!

[Jax]

Two words- PATIENT ADVOCATE!

Demand to see his doctor, and demand to talk to his case worker, and demand a patient advocate. At least that's what I've learned has to be done in order to get any answers from doctors. Also, you are an attorney, so you should look into the medical power of attorney laws in your state and see what else you have the right to know and do for your husband. Maybe even seek the advice of an attorney who specializes in that sort of thing.

You need to figure out how the hell he got a hypoxic brain injury!! That could be why doctors are ignoring you. They're trying to keep you from finding out the answer to that question. I've had doctors avoid me, case workers avoid me, and therapists avoid me because they didn't want to do their jobs or take any responsibility for themselves and their choices. It's how they're taught (by their lawyers and hospital administrators) to deal with their screw-ups and keep from having to fully do their jobs.

[GLENDA]

Jax, on Dec 15 2009, 12:24 AM, said:

Two words- PATIENT ADVOCATE!

Demand to see his doctor, and demand to talk to his case worker, and demand a patient advocate. At least that's what I've learned has to be done in order to get any answers from doctors. Also, you are an attorney, so you should look into the medical power of attorney laws in your state and see what else you have the right to know and do for your husband. Maybe even seek the advice of an attorney who specializes in that sort of thing.

You need to figure out how the hell he got a hypoxic brain injury!! That could be why doctors are ignoring you. They're trying to keep you from finding out the answer to that question. I've had doctors avoid me, case workers avoid me, and therapists avoid me because they didn't want to do their jobs or take any responsibility for themselves and their choices. It's how they're taught (by their lawyers and hospital administrators) to deal with their screw-ups and keep from having to fully do their jobs.

Jax why do we have to fight for what our loved ones NEED? I wish I would have gotten a real patient advocate here in Texas. Good advise!!!!

reallynewatthis, on Dec 13 2009, 05:48 PM, said:

Hi all - I posted in the '36 hour' thread that my husband has taken a real downturn and the doctors don't know what the problem is. He is unresponsive to light and pain with rhythmic jerking motions of his arms.

I couldn't be at the hospital today, so I left a note asking the weekend doc to call me and discuss the situation.

His mom went to visit him today and was there when the doc breezed in for rounds.

Instead of calling me, he had a chat with his mom and then got the heck out of there.

Here is her version of what the doc (not even his regular neuro, just the weekend guy) said:

"Oh, he likely has brain damage from oxygen deprivation. It only takes a couple of minutes. Don't worry though, they'll take care of all of that in rehab because he will grow new nerve endings. They are giving him the best antibiotics there are!"

She was laughing when she told me this on the phone because my husband had just stuck his finger in his eye. There was a whole mess of family there today and they just think things are hunky-dorry now because 'rehab will fix all of that . . . '

"Oh look, he's yawning . . . how cute it that! The tech said he smiled when she suctioned him! Well, he's just so much better today!" (at 10:00 AM the nurse had told me 'no change')

I'm not laughing . . .

I am so furious at this doctor I can't even speak, let me count the ways:

1. Not returning my call and having that breezy discussion with me first.

2. Making a hallway diagnosis when they haven't even seen the latest round of tests (ie - the EEG)

3. Having that conversation with his mother without talking to me first.

4. Making potential hypoxic brain damage into nothing more than a nanny-nanny-boo-boo that just needs a band-aid.

5. Not having a discussion with me about how this oxygen deprivation might have occurred since he has been intubated and/or trached since 24 hours after his fall.

6. Making the first time I hear about this 'diagnosis' be when I talk to his mother while she is at his bedside.

Yes, I know phenomenal things, including miracles, can happen in rehab. I pray 100 times a day that this is what happens. I also know that according to the articles I've read his current condition meets the criteria from a persistent vegetative state and after 3 days of that up to 75% of patients don't make any significant recovery of function. That drops off even more if the patient is older than 25. My husband is 48.

I've been trying to prepare his mom for just how serious this situation may be so that if things work out we can be thankful, but if things don't work out that there isn't a lot of 'but the doctor said everything would be all right!!!'

I have to work again tomorrow, but I am leaving a message for his primary physician that I had damn well better get a phone call. If not, my visit on Tuesday won't be quite as pleasant as they have been.

Think I'm overreacting?????

Are you in the US? Don't trust any Doctor Hospital Nurse CNA ...Nobody you have to battle for your loved one!!! Sorry to put this so bluntly...But take care of UUUUU!!!!! God Bless.
Glenda in Texas