what the!?!

I am sitting here in Winnipegs Ronald McDonald house watching Sam sleep. He did not get much of it last night. Or the night before or before that...

let me back up this train of rambling a bit....

ON Wednesday last week I called our Neurologist office to ask a few questions about the side effects of the meds that Sam was on and how they were ... ummmm.... a bit extreme. All we were wanting was an assurance that they were normal or maybe that there was a possiblity that it was also more absent seizure activity. What we got was a call about 45 minutes later from his nurse saying that he wanted us to get into the seizure clinic (EMU) the following week. This was followed by a phone call on late Friday afternoon to be in Winnipeg at the Health Science Centre MONDAY morning by noon. We would be staying for 5-7days of monitoring so be prepared...

We were a bit excited by this as we thot maybe it was more serious than we had thot. So Friday the call came (on our way to Josh and Ikes football game), Saturday AND Sunday brought butchering the cow, canning 57 qt and 30 pt of meat, bagging 100+lbs of burger, cutting a truck load of wood for cadets, cleaning the house, doing all ours and Sams laundry, baking buns, cookies, muffins, a square all for lunches this week, dinners and packing. Monday was a stop at the school to get work in order to stay caught up with this week and then the 3 hour drive to Wpg. 

We arrived at the HSC by 11.50am, were admitted and taken to the EMUclinic, where we sat for 45 minutes, then proceeded to a room where Sam was ‘wired up’ with electrodes to hook into a machine to read his seizure activity. From there we were moved to the ward -- room GD-242 -- where he was settled in and FINALLY at 2.30 (after I asked about his meds) he was given his meds, THEN I went to the cafeteria to get him some food. We spoke with the neuro and what his plans were for Sam ove rthe next few days and all was good. His dinner was brought to him at 6ish, and at 8.30 it was time for me to leave and .... no meds... again I inquired if they didnt have them ready yet I would give him the ones from our ‘stash’... but I was told they WERE in but he would be given them at 10pm.... 

This morning I got to the hospital at 10.30 and he had eaten ‘some’ breakfast (not enough in his words) and had not had his val proic acid yet... (he usually takes them at 7am!!!!!) BUT he HAD had his keppra... the reasons behind this were because they wanted to do a blood level first --- ok .... but Sam said they did that at 6 am.... he got his val proic at 10.45.

By 11.30 Sam was starving so I went and got him a doughnut (a rare treat these days), a fruit cup and a small coffee. Thinking his lunch would be soon it would be a bit of nibbly to have for the day. Well lunch did not come until 1pm...

Sam was absolutely ravenous by then! And as he is finally eating his lunch in comes the neurologist to inform me that we have been “KICKED OUT” since Sam is only 15years old and NOT 18.... WHAT!?!?!?!

The doctor was very apologetic and blah blah blah... proceeds to tell me that there IS seizure activity going on  and that makes alot of sense since there IS the bullet still there and blah blah blah.... then tells me that they DO have 24hours of monitoring to look at. And they are going to slowly ween him off of the keppra and onto Topamax.... more blah blah blah and more blah blah blah.... Sam then asks if he can play football and is told basically “no and probably never will because of the epilepsy”.... bit more of blah blah blah and ...

Then he leaves... I sat there dumbfounded and Sam close to tears of the new news on football. I left to call dennis... then I got my mad on and went to the nurses station where I continued to hear from 2-3 nurses FROM THE EMU CLINIC that this is all the neurologists fault and he should have known better and blah blah blah... I asked if no had read his chart first and saw his birthdate and did the math!? No because it is up to the doctor.... OMG! Seriously!?! Pass the buck just a bit more now ladies! Even when I tried to explain that it was NOT ONLY the doctors fault that SOMEONE at SOMETIME should have done the math to realize that this kid is NOT 18 and said SOMETHING to SOMEONE before we travelled 3 hours to get here! But nope all they kept saying was it was ALL the doctors fault.... sigh

I packed up all of Sams things and waited for them to get all the stuff off of him. I also (not in the nicest way either) pointed out that now he has had 2 days with little sleep (one night of worrying about going there and one while in the hospital), all his eating is off, his meds have been messed with AND a new med introduced...and I am expected to take him home...

3 hours travelling...

EXPECT SEIZURES now people! ANd because we are at a point with his seizures that he does not go to the hospital the seizure stress is all on Sam and me. He will seize and I will watch and deal with it and he will deal with the after effects of it AND his newly formed record of 4 weeks seizure free will be gone and we are back to square one -- waiting .... nice... thanks a lot! 

We came back here to the Ronald McDonald house to pack up and calm down and while I was talking to our Epilepsy advocate Sam fell asleep on the bed. Thankfully we were prepared to stay here in WPg for 5-7days, so we have the room. But we will stay tonight and start for home fresh in the morning. And if he seizes... maybe I will take him to the hospital and sit and wait for someone to do something....

When I get home I will be on the phone to our MLA and MP and next week after the elections I will be on the phone to the Minister of Health to explain this story to them too. I will be making sure that this doesnt happen again to US or ANYONE else! 

Right now tho I will sit, have my coffee in my room (not usually allowed in the House but they are letting me stay with Sam incase he seizes) and I will try to relax and read my book.... or maybe I will start some phoning...

Upcoming week ....

Tomorrow Sam and I are heading into Winnipeg for a 5-7 day stay at the Health Science Centre ... or well Sam is staying there and I will be at the Ronald McDonald house down the street.

He is being admitted to the EEG Clinic for a 24hr surveillance of seizure activity. Since Sam has been on the Keppra (and the val proic acid too) he has been experiencing major mood swings, extreme fatigue, lack of appetite, temors and memory loss issues. These are all side effects of his meds but they could also be due to absent seizures.

Sam has been very hard to live with... his mood swings have been so severe that they are scary. He has had issues with his memory -- he will talk to someone in the morning and by the evening he will remember talking to the person but not the conversation. He is not eating much, if at all (I was told by a friend that Sam's friends will get after him at school that he has to eat). He is tiring more and more easily everyday. When he eats, writes or does anything his hands shake so badly that he can hardly do whatever task is at hand.

We aren't sure what to hope for an outcome... absent seizure activity or change in meds ... either are not exactly the most favoured results.

Something on a more positive note with Sam, he started back to school last Wednesday. He is still working with an IEP (taking Math and English) but he is also doing 2 hands on classes (Foods and Nutrition  and Chorale). He is taking these 2 courses more for social time with friends and easier credits for him to attain. If things change with his health it is not a big deal if he is missing the classes. We were all happy for him to go bak to school but we did have some brain issues to deal with too.

Since his memory is not too great it was going to be hard for him to stay focused and on top of his work. Also, until last week Sam was not admitting that he has a brain injury. So his brain kept telling him he was 'fine' and he was more than ready to go to school. HIs brain was telling him that his injury was all in our heads... It wasnt until he started working on his self therapy book and he had a major melt down with Dennis, that he was able to start seeing that he has an injury and he needs to start working on getting it to heal.  We have seen some great changes in Sam in just the first few chapters that he has worked on. So part of the reason I am going to WPg with him is to help him stay on track with his self therapy and school work.... the other reason is I am his mom and I know I would be of no use to anyone here at home when he is 3 hours away with no family or visitors -- I know, I know... I am the big baby here...

I will try to keep the blog updated on our stay while we are in...

Changing all the time...

I thot maybe it was time to talk about our new routine here... our new a the moment routine I guess you could call it -- since it could change again next week! And I am not kidding...

Sam is now on a new med regime:
7am ~ 250mg Valproic acid and 250mg Co-Levetiracetam (Keppra)
2pm ~250mg Valproic Acid
9pm ~ 750mg Valproic Acid and 250mg Keppra

With his meds this high it is really setting Sam on his ass. He is so tired that he now sleeps til 9am (or later if needed) and goes to school for 12.30 where he is in  a class where he works on Math and English until 3.30 when school is out. He has football practice on Tues and Wed, games on Fridays -- he is assisting the coaches where he can and on Thursdays he has cadets. If Sam has any troubles with sleep (or lack of it) he is to stay at home and rest. We are trying to make his school stuff as normal as possible but with his high meds, short term memory losses and TBI issues we are concentrating on 2 courses right now -- with the option to add more as he feels he can handle without adding stress into the equation.

On this coming Friday we are off to Wpg for the ESAM annual general meeting AND his keppra doses get doubled to 500mg twice a day then too, so we may have a new routine to follow after that. School schedule may change also... so we will see.

Sam was none to receptive to this new school schedule at first until we wrote out 3 scenarios for him to choose from. He then realized what we were trying to explain to him. Mostly that this is temporary(hopefully only until January) and for his best interest and health.  He is still pretty unhappy about it most days but he realizes (I hope) that there really is no other option. We choose this routine because it enables him to still spend lunch and breaks with friends at school, participate with his football team and cadets AND (mostly) reduces the stress that he feels with school -- that cause the seizures.

Now also add to that he has a full fiberglass cast on his foot -- the doctor thinks he may have fractured his ankle and hopes that this will help it to heal better or at the very least help the swelling to go down so they can get a better read on the xray...

This new routine also means more running to town for  Dennis and I.  Depending on our day and our schedules, one of us drives Sam the 30miles to school and then comes home. I also am running into town for football once a week, cadets (I use this time to visit with Daddy!),  and Friday football games. Hannah has joined gymnastics this year and since she has never asked to join anything really we felt it was not fair to say no to her.... so we are in town 2times every day ... 30 miles one way...

Some days I have done meals, laundry, housework, phone calls, writing, football stuff AND drove 120miles... whew... no wonder I am beat! I know this is just a season and it will all be over with before I know it. I am trying to see the best in each day -- such as Sam is now almost a month seizure free!!!!, Josh is starting to talk with us, Isaac will be 14 on Wed, Hannah is growing into a beautiful young lady....

sigh....

All because routines change...

More than one injured party

3 years ago, as most of you know, our second born son Sam was injured in a freak gun accident. He was at his grandparents farm with his older brother, Josh, target shooting  and Sam brought his gun up too fast and his himself in the head with the scope. This caused him to become dazed and drop his gun which discharged and shot him in the head. That was our first injured...

Our family has always thot to be the 'second' injured party until last might...

Over the last 3 years and mostly the last year our family has under gone some major changes, and I do not mean of a medical kind (altho' there was lots of those kinds too). The changes I am talking about are us as a family growing apart.  Feeling like we are just a bunch of people that live in a house and tolerate each other.  We have talked with our kids and tried to find out what the problem is. Others have suggested that we are under going what most families do as your kids enter their 'teen years'.
It had finally all come to a boiled point this weekend and Dennis and I stayed on top of the kids until we got some results... and some talking out of our 'strong silent' boys.

I am going to go back a bit here and state that I have always wanted us to go to counselling but due to lack of support from the rest of the house and then there is that pesky issue of money to pay for it, we never have gone. This weekend finally brought to light that we either: A) go to counselling, B) start talking about how we are ACTUALLY doing or C) continue on the path we are on and not have a family life -- continue living in the hell we have been.

When we brought this news to the kids and shared with them things that have bothered us, things that irritate us, our 'happy thots'... just life and how we feel we are doing they started talking too ... a bit ... they all basically agreed they wanted to deal with our family issues as a family first and if we felt we needed it later we would go for more professional help.

So they started talking and brain storming. There was a lot of things said that made sense, some things we (Dennis or I )had not heard out loud but had assumed was being thot by the kids. (they can be very sensitive and thotful when they want to be!)

But the oldest never said anything. Josh was basically silent the entire talk. Last night I had a good talk with him and I dont know what made me think it let alone say it, but I did and it opened a whole flood of emotions in my Josh. I said "where you the one who said to go target shooting?" and that made him break down... he crumbled in front of my eyes and I felt a huge weight hit me. Josh has held it all in and has blamed himself for all of this. He blames himself for not only the accident but for all the things that have followed because of it.  I cried right along with him, assuring him that it was most definitely NOT his fault and that we do not blame him for anything.  We cried and hugged and cried more. Then we talked more and he admitted that this is the reasoning behind his not wanting to take the other kids anywhere with him or do anything with them because he is scared that someone will get hurt again and he will be responsible. It is because of this too that he FEELS so responsible and stressed out about Sam.  We talked for a while and then we decided to take a break and we will resume talking tonight... with everyone.... as a family.

I pray that this will be the new beginning we have all be desperately needing and wanting for a while.

You're not going to believe this...

Yes that is Samuel...

yes he is in a hospital... again

Yes it is an xray machine

No he is not there due to a seizure.

Well it is a funny story.... 

no not funny HaHa...

Funny as in OMGosh seriously!?

So here is the story:

Tuesday night we were at football practice (yes Sam is still participating with the team-- he is helping with training and where ever else he can) He was playing catch with the quarterback -- who broke his arm this summer in 2 places). Sam jumped up to catch a pass and he came down on a 1X1square inch pipe that is on the inside of the school track and he rolled on his ankle. Immediately Sam ankle swelled and it looked like a golf ball was under the skin of his ankle.  Another mom and I walked with Sam over to the hospital (ironically another player on the team was at the practice who had some crutches that Sam used).  By the time we were done with xrays and were seeing our doctor (we were lucky he was on call) the golf ball had grown to a tennis ball...

The doctor looked at the xrays and put Sams leg in a 1/2 cast. Sam had to use the crutches for a day and then use them only to help him put weight on the foot. If he was not able to put his full weight on it by Friday (which was yesterday) then we needed to go back to the doctor because it might be fractured. If he was able to put weight on it I was remove the 1/2 cast and rewrap the ankle with a tensor bandage. These are all the lovely colours of his ankle once we removed the cast....

It was not fractured!! YAY!