Friday, April 15, 2011

Day 1050 - Apr 14, 2011

I had a meeting today with the neuro-psychologist at the VA that did Kevin's testing. At about 20 minutes or so into the meeting I knew he was not really hearing anything I had to say so I grabbed my purse and left right in the middle of it. There was just no sense in wasting my time and at this point it doesn't really matter anyway. It's done and it's on the record that - according to this very important doctor - Kevin will see no real gains in his life. He pretty much won't get any better because he is now 3 years post injury and people really only get better within the first year.


Honestly, sometimes people just can't see the forest through the trees.

It just ticks me off though that someone so narrow minded can have such an effect on someone else's life. I really regret allowing this test to be done. I should've known better.

So as you can see this is still a very sore subject with me. I think I mentioned a little bit about it, but it just mainly said that Kevin can't accurately be tested because he can't speak, but that he doesn't understand what's going on around him most of the time - if ever. The doc reiterated that today, but if that were true there would be no way that Kevin could do all that he can do, could respond as he does in conversations, could remember exactly where each DVD is in a book that holds 300 of them and he surely wouldn't be able to run circles around me on his phone and his iPad.

Now I'm not saying Kevin understands everything - we still have a long way to go - but he knows a lot more than this guy gives him credit for.

Frankly, this is the last time I am going to think about it. I know what I know about Kevin as do all of the people that are around him at any given time. WE are the people that matter. Not some doc that saw Kevin for two hours of his life and will probably never see him again.


So now I'm all riled up again.

But honestly, I sat outside the VA hospital today waiting for the car and just felt so tired and dejected. I am just so exhausted at having to always deal with so many issues on so many different aspects of Kevin's care. I shouldn't have to go see a neuro-psychologist and tell him that he didn't see things clearly. He can't fathom that he's maybe not 100% correct because it's what he's been taught. In a book. Not in life - but in a book. Well Kevin isn't in a book. People like Kevin aren't alive. They die when this type of trauma occurs.

So I say "let's rewrite the damn book!!!" Since there appears to be proof - let's all agree that you CAN get better - significantly even - after a year, or two or even twenty!

Maybe folks should at least not put it in someone's record that they have no potential. Heck, a comment like that could cause all of his therapies to be stopped. I mean...why spend the money on OT, PT and speech when he isn't going to gain anything, right?

Ok. I need to stop because I am just ranting here...


Lorraine said...

You are absolutely right, everyone is different. If you didnt see a difference in him you would be the first one to say enough is enough, but he is still learning and improving. At this point they will what to quit because of the almighty dollar cost. They thought nothing of sending him overseas. Sorry for your constant fights to get things done for him. You are a wonderful Mom to him, and he couldnt have anyone better in his corner with him. Take care.

Anonymous said...

Kevin has astonished everyone with his recovering. I agree, one person is not going to know each individual, how far they have advanced, or what potential they have. Kevin has proved time and time again how he beats the odds and then some. You know Kevin more than anyone. Please don't let that guy get you down. Some people are book smart and it ends there. Is there a different place were he can get tested?
Just because someone can't communicate the same way a lot of us do, doesn't mean they don't know what's going on. An example- my cousins daughter in her early years couldn't hear much if anything. She wasn't speaking. The whole family learned sign language so they could communicate with her. She had an extra class of signing as well. Anyway, years ago at Christmas everyone was at our parents house. Although we couldn't communicate with her, she knew exactly what was going on. She went up to the Christmas tree and her hands were just flying! She was telling her parents all about it and how pretty it was.
She has since had surgery and also wears hearing aids. She can hear pretty good to talk now with that help. She has such a fun personality! She's been married now a couple of years and they have a little boy. Anyway, I guess when an outsider is looking in, they might not get the whole picture. Just because someone doesn't speak words doesn't make them unable to learn that's for sure.
Sorry you had a bad experience there. Everyone else knows better about Kevin! Hope you guys have a great day and weekend! :)
Take care,

Anonymous said...

"I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do." -Helen Keller

bearlythr said...

Our first experience was with a neurologist who was cold, clinical, extremely negative and told us Zack would basically be a vegetable for the rest of his life. We were shattered. Through word of mouth we found Dr. B..a kind,sensitive man who told us they call it the "practice" of medicine because its not an exact science....half the time doctors are guessing when it comes to brain function and that certainly was the case in our situation. Kevin has exceeded expectations, time and time and time again. Some dipwad who has seen him once really has no idea how far Kevin has come and has no place pronouncing judgements on that basis. Sounds like another doctor with a god complex. YOU know Kevin better than anyone and he has made and continues to make strides in his recovery. Ignore the idiots ( that includes all doctors, nurses, aides, etc), hang on to the good ones and keep fighting for your kid. You are not only the best judge of his abilities but also his best advocate.
As exhausting and frustrating as it has been, you have done a great job. Hang in there.
God bless,

Valerie said...

I would expect this physician to be feverishly writing down everything you were telling him. I would expect him to be excited to know that people with brain injuries CAN continue to improve and learn, even after a year. I would expect him to be thrilled to share Kevin's progress with his colleagues who deal with brain trauma. What a wonderful discovery that needs to be shared with others. Imagine how many patients could benefit - those that otherwise would be denied therapies that could help them lead a better life. Isn't that what physicians are supposed to do? Aren't they supposed to pass on information that repudiates prior beliefs? That is how we are now able to treat diseases that previously went untreated. It's sad that this particular physician doesn't live up to what is expected of him.
I'm glad to hear that you got some scrapping done this week. Wish I could have been there with you!

Anonymous said...

There is only one person in charge of our lives and who knows what we can do and what we can't do AND his name does not begin with the letters DR. - He is the one who has given Kevin and you all the miracles we have seen in the last 1050 days and He will be the one who will continue to watch over you.
Do not allow this prima dona physician to tell you that Kevin will not make any new strides in his life. Believe that Kevin will slowly but surely recover more and more. I don't think you or anyone else expects that he will return to his pre-injury self; he has learned so much and has come so far. Perhaps he's talking about patients such as Kevin who have no loved ones, who have nobody to care for him, who lives in a hospital without stimulation. I personally believe that Kevin is where he is because YOU would not take NO for an answer and you LOVE him unconditionally (along with many others).
I continue to keep you all in my thoughts and prayers. Prayer is a powerful thing; sometimes even better than medicine.

Tom H said...

I fear your comment about not allowing future therapy because of statements like "no improvements expected", may become true. The VA, like any other govt. enity will be looking for cost savings at any price.

karen said...

Ooooh, lots of warm hugs to you Leslie. This book stuff is horse manure. I wish I could offer you help, because you could sure use a break from the heartbreak AND the care management. But I guess we each get our path, and all I can do to support yours from here is offer you encouragement. Stupid, stupid "professional". Books are important but they do not have blood flowing through them. People can, and will always surprise.

I love that Helen Keller quote. I have a friend like that, the one with CP that the meds constantly discount and write off. Some of them refuse to speak with her directly, or talk to her like she is retarded. When they talk to her husband, he redirects them to her, but when it is medical issues, and they continue to refuse to acknowledge her, it becomes horrifying.

She just completed a two-leg trip to present at SXSW and another conference in the west. I know she is capable of speaking for herself at a doctor's office, through whatever means she commonly uses. But they don't think. Period. Idiots.

Kevin is awesome. You can see from how he looks at the baby, the pleasure in his eyes, that he is a lot more clued in than this doctor gives him credit for. I hope you find some support for how exhausted you feel.


Cathy M said...

When you write your memoirs someday, you will already have the title: "Let's Rewrite the Damn Book"!

You and Kevin are fighters and I really believe you have not seen even close to all of the wonderful surprises in store. Please keep the faith.


Cathy M

Long-time RN said...

Can't add much more to what others have written. Kevin has made amazing strides in recovery, and you're advocacy is a huge part of his current abilities. Unfortunately, I had the same thought as Tom H. I'm sorry this physician's assessment has hit you so hard. Trust your gut.

Pattie Matheson said...

Yup, everybody has pretty much said it all. I especially liked what Valerie said. That Dr should be as happy, astonished, and proud of his accomplishments as the rest of us are.

Kevin is a fighter and so are you. I hope you're getting plenty of rest while he's away.

Are you able to see any significant changes in him since his time up there?

So great to see him posting on his FB wall!