there ain't no easy button...

I wish everyone knew more about Brain Injuries...

I wish people would take time to learn about not just Brain Injuries but the person behind the injury was well...

I wish people wouldn't be so quick to find the easy button to "fix" Brain Injuries...

I wish that there WAS an "easy button" ...

..... oh how i wish there was an easy button....

As i write this we have had a crazy month or so (who am I kidding... its been a crazy 7+years!) with Sam. He moved out and got a 'real job' -- he is no longer on the farm and he rented a room on the second floor of a house about 40minutes away. 

He loves his new job. He is working with construction, building buildings, pouring concrete, crawling through crawl spaces to put in stuff... I can't pretend to understand or even KNOW all that they do on the sites so I will just say he helps with building buildings.

We have had appointments with the neurologist, with his regular doc, with a surgeon AND with an epileptologist! 

When we went for Sam's EEG the regular test was found to be normal but the stress test EEG showed as much seizure activity as when he was seizing, so the neuro sent us to an epileptologist. Now this doc seemed good in that he asked Sam what he wanted to do about this all. And Sam's response was to not be tuned into a zombie like before. The doctor then explained that for us its is not a matter of IF he seizes again, its a matter of WHEN. So as long as the EKG that Sam had done that same day shows up good, he will start taking an infant dose of a new med. HE is starting at the smallest dosage to make sure there will NOT be any side effect issues. According to the doctor the worst side effect is dizziness and it isn't an all day thing, just when he first takes it. SO if all goes well, he will slowly transition into an adult dose after a few months. (infant, toddler, child, teen, adult....) BUT there is one thing that is hard to swallow is that this is a very expensive medication so we are praying that the government will take the brunt of it. (lucky for me the doctors office will be the ones fighting for this NOT ME!) 

Sam also had an appointment with our family doctor and we found out he has a lipoma on his back {medical info on that HERE). And she sent him to the surgeon abut having it removed - that doctor said it was an urgent procedure and it was going to be removed fairly soon, it was most likely nothing BUT there is a chance it could be cancerous... BUT a small chance! (whew) We are still waiting to hear from them about when he is having it removed ... almost 6 weeks later. THEN he had his blood work done for the procedure and then he got a call back from the doctors office for him to come in because they found something in his blood work! So of course our thoughts go to cancer? diabetes? Why else would they call!?!?! It turns out his cholesterol was low.... nothing to stress about but it sure would have been nice to know this when they called that it was nothing major/serious.... 

The reason I am filling y'all in on this, is that this is all STRESS on Sam's mind and after 2 medical appointments in one week (Monday and Thursday) Sam woke up on Friday throwing up and dizzy and not feeling so hot. He attempted to go to work and couldn't. He went home and slept almost of the day. He said he checked his pillow  and there was no signs of a seizure... but I am wondering if he has been having them. I am going to keep track of his 'sick days' and see if there is a pattern -- as long as he tells us about them that is. 

I really wish there was a way to explain this stress to family, friends, his employers (but not to get him special treatment) just so they could understand that he LOVES his job but when stresses that are in most peoples lives are easily dismissed or do not create an issue.... can create a HUGE issue in the brain of a BI Survivor. Right now Sam is stressing about medical stuff -if he starts these meds will he be out of it again? will he have to go to more appts? will he have to move home again?, which stresses him about work-- will they understand? will he lose his job? This creates another stress in  his brain that he CANNOT control and comes out in the form of seizures.... so its a catch .22 How can we explain that his brain WILL shut him down even if he doesn't want too! His brain will cause him to sleep, be disoriented (not think straight), forget simple things, to stutter or lose track of words? 

Why is it people will take a broken arm, a stroke, cancer and even epilepsy and look it up to see what all is involved but not for a Brain Injury to help the person!? What are people so afraid of!? Just because someone looks fine on the surface doesn't mean that there is a bigger picture under that surface! 

But how long can someone keep a job when they have medical appointments, stress that causes other issues, possible seizures.... 

We are hoping and praying for an appointment with the neuro psych to help him to deal with stress, but that appointment will be another long wait I am sure... 

so in the mean time ... 

we do what we do best... 

we wait...

OH how I wish there were an easy button...

new hope

So Sam has been at the CATC (Children and Adolscent Treaattment Centre) for 5 days and was able to come home last night, for the weekend but he has to go back on Sunday evening. He has met with all the doctors and psychiatrists and counsellors. His days are busy, spent with one or more of the professionals, doing school in the afternoon, working on booklets to help deal with things and general socializing. He says he is getting a lot out of it, and i guess this weekend is a trial run.
If we have any issues or problems we can call the CATC and take him in -- I doubt that will be necessary. He seems much more relaxed and more of the Sam we had before his accident almost 4 years ago. But then while he is at the centre the stress of home and school and family is not there with him.
Dennis and I spoke with the other kids this week too while Sam was not here and we explained to them that we will all be going for counselling and that they need to be open and honest about their feelings toward us, Sam, each other, this situation. We had a good talk with them on Thursday night and I hope we were able to convey the importance of this... time will tell I guess.

Something we did talk about (that we never had before) was who felt that since Sam's accident they were missing out on things -- when it was all explained and pointed out about we were talking about they realized that no one had been missing out on things really. No more than anyone else in any household that runs on a budget... the kids all still got football, cadets, gymnastics, movie money, lunch money, meals out, new clothes, new music, ipods, etc. There has been a lot of 'poor me' going on with us all... and we just reminded the kids of all of these 'blessings' and how we need to focus on what we have and not what we dont. We also pointed out that Sam has to do this also -- he needs to focus on what he CAN do and not what we can't. We tried to get them to see a bit of the last year thru Sam's eyes and how the loss of his getting his license, not being able to go to friends houses, play hours of video games, being tired all the time, feeling drugged out, having trouble walking and talking and having to spend almost everyday with Dennis or I  -- is most definitely not a walk in the park. Basically, Sam gets 'special treatment' but it is not a treatment that any of them would want because it means that they lose out on everything else. It was amazing to see them start to realize what Sam's days are like and how if they had to spend as much time with us as Sam does ... that it would suck.
Even Isaac had a change of attitude once we spelled out how Sam spends his days at home and how his days are now at the CATC.

We got a phone call from the CATC on Thursday telling us that Sam's val proic med levels were high (they should be between 50-100) and he was up at 123.5 -- so they reduced one VP a night and the next day they tested and he was still 115. Dr. M (from the CATC) couldnt get a hold of Dr.A (epileptologist) as he was away for a few days and so we arent too sure what the plans are for things yet. Hoping Dr.A will say to reduce more VP -- crossing fingers that then Sam will be less tired and feeling sluggish, irritable, etc. (maybe we can get him off them altogether!!! .... wishful thinking .... )

For now our family is playing a waiting game on doctors and the centre and we are taking everything one day at a time...