Land of confusion...

 DO you remember the hit song by Genesis in the 80's "Land of Confusion"?
 Maybe I am just a weird 80's chick that remembers far to many things from that time ... and I should just forget them!
I ask because that is how I feel these days. I haven't updated on my health issue from January, because I am so freakin confused right now about it all.
 I went to a neurosurgeon in February as planned and he said "I don't know what else I can tell you, except that you probably DON'T have a brain aneurysm BUT I should see you again in about 2 years for an MRI. IF you do happen to have an aneurysm, I feel it is so small that there is no chance  of it bursting. So go live your life." 
Ok I get the go live your life. I would totally get  the we will check again in 2 years, if he had actually checked on his time and not just rely on the original CT scans (which he claimed was probably not done right to begin with...ummmm ok?) But to DO NOTHING to even try to help elevate my stress or my emotions, like maybe schedule the MRI or at the very least another CT scan!
But what really got me was my husbands acceptance of this (essentially a stranger) doctor, to look at my CTs he felt were either wrong or not read right, and to take all that he said as 'good to go'. That was a slap in the face.  I just can't get past that for almost a year I had CLEAR CT's and then all of a sudden there is something there, but not worth to double check or even worry about it. I know there is nothing that they can really do about it but to be just written off....leave you feeling kind of lost and worthless. THEN I go to MY doctor about a separate issue and she (who knows that this neurosurgeon said and basically said to me "well, he is the specialist") keeps talking to me about 'my aneurysm is so small so not to worry about it.' So my question is: DO I or DON'T I!? talk about confusion! No one wants to give me ONE answer and stick with it!  Do I get a medic-alert bracelet?Do I wait and let me be out and about one day and it DOES decide to grow and burst and no one knows why and I die!? Or do I go against the doctor's 'assessment' and get one just in case!? My hubby doesn't seem to understand the emotions that I am going through with this. He (for some odd reason -- odd as he never trusted doctors diagnosis' without some serious questions asked and a complete analysis in his own head over things. He usually would question and ask for further tests, etc. but not this time.... am I over reacting!?

I started seeing an acupuncturist shortly after and while he has done some great work with alleviating the headaches/migraines, I do still have issue with headaches and sudden pains in my head. But I can live with them (and I guess I have to as no one wants to listen to me anyway! :|) He is also helping me with my depression and anxiety, but again in small amounts.

My depression is always with me. Kind of like that commercial where a black cloud is following a woman. I struggle with it daily... somedays its is hourly or even each minute. I feel like I can get through the moment and then all of a sudden... I wish I could just go home to my Lord. I get so tired of fighting the cloud. Somedays it is like it is trying to suffocate me. I wake up disappointed most mornings to still be here. I realize that my emotions are probably tied in with my 'non-diagnosis' ... but what to do with the feelings... I have no idea.

I am not sure if anyone reads still but while I am thinking of it. Prayer for our Sammi would be awesome! He is so lost in the world. He is making crazy decisions, smoking not only cigarettes but weed and I am sure he is into more than that and he is drinking. He gets depressed and when he gets like that it scares the heck outta me, because I know what it is like to get to that point that he gets too sometimes.I pray and I try to always kept handing all my fears and worries back to Him and let God look after things, but I am human and things will creep back into my head ... But Sammi seems so lost and where he is finding 'himself' and 'acceptance' are not places where it is true or lasting. He allows himself to be lead astray but people who don't truly care about him -- which leaves those of us who DO love and care for him standing in a spot where we are hurt and trying to understand. I am scared of what will be the next thing he does or tries to try to find acceptance. I am scared of getting a phone call that he is hurt, in jail or worse. Sam is so much like my daddy that it truly scares the crap out of me. He is always there for everyone else, expects nothing from them and all at the expense of his health, bank acct., or life! Please pray for Sam if you remember! Thank you!

Well that is all for this update. I am daily doing battle with that darn black cloud and wish I could talk to someone about it but anyone I have tried to talk to about it brush it off, say 'oh i get down too sometimes', 'what do you have to be depressed about?!' , blah blah blah.... if only i could just open my head and let someone see what is happening in there physically AND mentally....if only....

some things {just} never change

so to catch you up on the latest here in our corner of life:

Sam is now done with school, moved out to the town 30miles from us into a cool little basement suite and has been working for a local farmer there for about 2 months. 

He seems to really enjoy his job (working with both cattle and grain -- the grain seeding and all that is included in that is a new adventure for him). 

On this past Friday, Dennis and I headed into Brandon for a quick trip to pick up some farming supplies and received a phone call from Sam that should he go to the dentist to look at the tooth that the calf broke when it kicked him in the jaw!
We got things sorted and got him to the dentist before he left for the weekend and then off to the hospital to check on concussion risk and other issues that may have come from it. He was checked over by the nurse and sent for X-rays (in case of a fracture) then we were sent back to the doctor to have him fully checked out.

I went in the office with Sam for a few reasons (one of them being that we are not fond of this doctor or the bedside manner but in our small town {and saddly even neighbouring towns} there is no choice of doctors -- you hav to use the one they 'gave you' basically)but mostly for moral support as he is not used to having to deal with these medical issues on his own AND lets not forget ... well... he forgets!
So I was there to help him out.
Firstly, she didnt even look at his X-rays, stating that she could 'see he had no fractures', then when he told her about  his BI and seizures and whatnot, she 'listened' (using that word loosely here) because as it turns my concerns were totally founded -- but that comes later. She said he had no concussion but it was good for him to come home with me so we could be there if 'anything happens' (now what would happen if there were no concussion or fractures?!) Take it easy this weekend and no work til Monday...
NO CONCUSSION--- yet he had blurry vision and a headache... ok... maybe I am over protective.... but really!?
NO FRACTURE -- from a glancing look and a bit of poking with her fingers... ok no screaming from Sam either... so thats good.

Sam came home with us, slept crappy, ate very little and looked like hell on Saturday morning. Swollen face, circles under his eyes and tired. But he got thru the day and did a bit of tinkering, admittedly he went for a ride on the dirt bike (which I was against) and then headed home to meet some friend for a movie intown (but no driving). Woke up feeling a bit rough on Sunday but felt better than Saturday -- so he must be on the mend. Then up on Monday morning for work...
dizziness, nausea, blurry vision and a general feeling of crap. NO going to work, calls me and i tell him to get to the doctor again and make sure she looks at the xray  AND listens to you!
Luckily h is able to get in in the afternoon and this time she listens ... i think.
Her diagnosis is that Sam was having a delayed reaction to Fridays activities (concussion!?!?!) and he probably has an infection -- so med's so that it keeps a fever away and risk of seizures -- and no work for another 2 days! (updated count of days off now 4! Four days with no pay and Sam is stressing a bit from it...)
Some things just never change! I thought we were done with doctors and them not listening to us about Sam and his BI. Doctors need to start listening to the caregivers about things - no matter how small or 'insignificant' they think the information is! We usually know a lot more about BI's, symptoms, new treatments, expectations... you name it we usually know all about it! JUST LISTEN DAMN IT and stop making us feel small and crazy! We 'specialize' in this, they usually don't.

**sigh** Ok Rant is over: Sam is starting to feel better and hopefully back to work tomorrow.

Seriously... what next!?

So for the last 5 years I have been phoning and fighting and phoning more to try to get help for our son! From when he was 12yrs old we were constantly told from the medical professionals and government offices that there was not much they could do for us "now"... when he is an adult there will be more help available. (we were quite frequently reminded {like we could ever forget} that there was no 'real help' for Sam as most were not 'equipped to handle or deal with youth brain injury'.

ya... not a big surprise to us here in Manitoba.

Even when he had seizures, we were sent to the 'adult epileptologist' since he as 15 and soon to be transitioned to them anyway, only have us tossed like trash to the curb of the hospital when we were finally being admitted in for an week long ambulatory EEG! (this was after they messed with sleep, food, meds and moods -- AND Sam had a fractured ankle!!!) Then we were moved over to the 'child epileptologist' who did nothing but drug our son to the max and created a whole other lifetime of issues we will deal with! And had plans of keeping him on the high doseages of meds until he was 17-18yrs old {basically until he was old enough to transition to the 'adult epileptologist' .... again} We could not get in to see any psychologists, psychiatrist or counsellors either without getting "we are not equipped with dealing with youth with Brain Injuries" OR the best one "you are handling this great" "call us if there are any issues" (from 3hours away and a mile long waiting list)
So now he is 18yrs old, has never had any real help in dealing with his stress, BI or issues that arise with BI's (addictions, PTSD {which we were told there was none}, etc) and is in full on denial about it all!
We have been trying to get a disablilty tax credit for him (so he can work but have a bit of extra wages to not have to claim) and we were told that NO he does not qualify. We used his neurosurgeons diagnosis of "long term permenant brain injury", "at risk of seizures", "some cognitive issues"... and we were refused. We thought we would go the route of the neurosurgeon AND the psychatrist he saw for a few days while in the CATC (child and adolenscent treatment centre) from 2 years ago. He just informed me that it is almost impossible to get the Disability Tax credit (it is very convoluted and full of crap) and he only has a hand full of patients who get it. It is easier to get Disability in the form of monthly cheques (Canada Pension Plan) BUT Sam doesnt qualify for that either!
So basically this guy- our Sammi- has had NO HELP (other than us and loads of prayer) to deal with his BI (in the formative years where he really could have used it) , so we are at a place where he is now in denial of it all -- and there will be no help for him in the future until he hit absolute rock bottom and has to try to find help then (and honestly I am scared of what that will entail with him) which I am sure we will be told it "should have been done earlier on".

who to believe!?

127/89 his blood pressure is high and now do this.... Dr. A

115/70 his blood pressure if fine  so don't worry about it .... Dr.T

His med levels are high... toxicly so... 134 & 136 and they should be between 50-100, so something needs to be done so go see Dr.A ... Dr.T

No need to worry, his med levels spiked so no changes for now and we will see you in 2-3 months  (btw no changes in meds for 2 years AND we will let Sam go for his learners license) ... Dr.A

OH! that is Typcial teenage life, they sleep a lot! We do not concern ourselves with the tiredness, he needs to exercise and eat and he will be fine-- it is not the medicine really, he is out of shape and will feel better after a month of exericse ... Dr.A

WHAT!? Med levels DO NOT spike and I am NOT confortable with this.  He is tired because of the meds and we need to work on his quality of life and find the best solution with the lowest possible doseage of meds. Go for more blood work and I will phone Dr.A and we will discuss this then I will call you .... Dr.T

This has been our last 2 weeks. One doctor telling us one thing, the other telling us the COMPLETE opposite. I feel like my head has been done in! I have been telling doctors since Sam was diagnosed with epilepsy last year that something is not right. NO teenager goes to bed at 8.30 VOLUNTARILY unless there is something not normal. Dr.T said yesterday that the reason why Sam is so tired could be because his levels are so high and at toxic levels.
The reason why he has trouble with writing at school or his eye sight some days is because he is at TOXIC levels....
I am so frustrated because they tell me to let them know when this or that happens and when I DO tell them I get brushed off. I know my son, I know teenage behaviour, I know that this is no jiving! I am tired of being told that it is all 'normal' when I know it isnt...

The trick now is to find the right doctor to listen to us!

Dr.A wants to wait 2 years with Sam on these levels (the val proic can absolutely wreck his liver over a long period) and then start to 'play' with the levels. But in 2 years we will be transferring to the adult side of things and then it gets worse! The whole reason we were sent backwards to  peds was because they could do stuff for us NOW! And now this doctor wants to wait. When I tried to point this out to him when we were there there, he shut me down fast but then never answered the question.
We have also been told by a teacher that they have noticed Sams eyes rolling and fluttering and when they look back it has stopped-- so they arent sure if they acually saw anything. So when I tell the doctors this (because they asked for me to record it and let themknow right away) they bruch me off and say "ya well it wasnt a grand mal. So .... no worries" SO why did you want me to track it? Sam's friends have noticed he has periods of 'spacing out' and yet when I tell the doctors this they say nothing except sign off on the paper work for him to get his learners driving permit!

I am so mad right now.... I am sick of doctors and their breaucractic crap it isnt funny. There might be kids worse off than Sam but that doesnt mean that they write him off! Our son is just as important as any other kid!

I am going to fight for my boy from now until the day I am with the Lord... so watch out doctors, I am on the war path now!

Thots and crap...

This is how I feel a lot these days... if only it would work...

Sam has been on the topomax for almost 2 weeks and I can honestly say that I hope that things start going in a more family friendly direction. We are not sure if it is the topomax on its own or if it is any combination of the topomax, keppra and val proic acid.
Sam's moods have been extreme to say the least. He will be fine one minute and then the next he is off on a tirade and is lippy, then the next moment (and this is the one that really scares me) he is silent and sullen. He looks like he is just ready to lay down and sleep forever, never to get up again. I worry about this side effect because I know this feeling.
I fight it daily.
I dont know if you ever stop being 'bi polar' (or manic depressive as they used to call it) or if you just get accustomed to learning to live with it or better at hiding it?
But when Sam gets in that mood I just want to cry myself. He doesnt want to talk, eat or do anything...
Today I will be spending my day phoning the neurologist about these side effects, a sleep lab letter we have received and a few other things. I will also be phoning the neuropsych about when we are going to see them and how we are worried about these side effect (so please do not wait on getting in to see us!)

My stress level the last few weeks has been astronomical and although I have tried to relax, I find I can't. I am so tired, feeling lost in a pool of information and LACK of information, self doubt, self pity and a pile of other things that I dont even feel like me. My cousin was out this weekend from Ontario and we went out on Sunday morning with our cameras to take some pictures and I couldnt find any relaxation or creativity in it. All I wanted to do was cry.... which is really all I feel like doing most days anyway.
I honestly feel so alone in this all. Dennis is a help but only in so much as he helps with working with Sam. I cant tell him how I feel because the way he handles stress and things is much more different than me. I need to cry it out and then I will think it out and try to figure things... but I cant even find the time or strength to actually have a good cry. It is stupid really....
I go to curves to workout and then dont be smart at all on my eating (not that I eat alot of junk, I either eat or dont eat)
I am also mad. Mad at medicine, doctors, Dennis, family, Sam, myself and I am ashamed to admit it God.  Some days I just ask "why" ....
Why did you give this responsibility to us?! Why did you do that when I dont handle this well?!  What am I to be learning!?
WHY!?
I know there is a reason for it all... I just wish I knew why...

I know today is a jumble of thots and crap, but that is my head these days ....

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...

Times they is a changin' ...

After our week of changing of meds, strep throat, holidays ending with the seizure was followed up with a first thing Monday morning doctor appointment with our family doc. Dr. N. Both Sam and I had appointments and both had a bit of alarming news.

First of all, after talking with the doc about Sam’s med levels we were told that with the fragments sitting in the 3 different lobes that he is most likely having 3 different kinds of seizures..... so one type of medicine is not necessarily going to work. He may need to go on a second med to help with the seizures. The doctor also suggested that since Sam is sundowning by 2-3pm (this is what valproic acid does to people) that he only takes a 1/2 day school day...

Sam was NOT impressed with this news. He is just a ‘wee bit’ upset... to put it mildly. He told Dennis that he didnt want to do a 1/2 day and who can blame him. He is going into grade 11, he will be 16 soon and wants to be with his friends not stuck at home with his mom. We are still working on what we are going to be doing when school starts (In 2 weeks)

We are hoping for the neurologist appointment to be moved up too now -- our family doc is going t aim for in the next week or two or at the latest in the month (I think he meant Sept.. but we will see)

I spoke with the school student co-ordinator yesterday and she is going to work on getting a tutor for Sam if needed. SHe also said the school will work with us for whatever we need. It is great to hear but in the last 3 years it all seems to come down to the teachers and if they don’t ‘see anything wrong’ with Sam so they don’t help with what is needed for him: reminders to take breaks, reminders to write down assignments, checking in with him throughout the class time on how he is doing, etc. They left him to his own design these last few years and he faked his way thru it fabulously! (give the boy an Oscar...) SO maybe this year with the URIS nurse giving a talk about epilepsy at the first Professional Development Day and what to watch for and do they will help us more. 

At our appt with the doc. we also learned that I have high cholesterol ... the not so good one. It is high enough to be concerned and in 3 months we will test again and see what it is. I AM exercising and watching my diet-- doc said this one is mostly genetics so not a WHOLE lot I can do... sigh BUT!!!! All the tests and work ups he did a few weeks ago show my physical was good -- YAY! 

The next few weeks are going to be interesting and hopefully a continued move in the direction we need it to be to get Sam the kind of help from the school that he needs that will work with not only his epilepsy but his TBI too. I pray it will not be stressful for him (seizure trigger!!!!) and it will be a workable arrangement for our whole family -- because  since Sam’s accident in 2008 this has been a whole family lifestyle change and life change. It needs to work for our house and our family not just Sam... and I think a lot of people forget about that part of our journey ... Dennis and I still have 3 other wonderful children to raise and spend time (not to mention money) with and then there IS that pesky thing of keeping a marriage alive and running.... sigh 

Land of Confusion...

After yesterdays trip into the city, I can say I am now totally confused about ....

well...

everything.

I thot I had a grip on a lot of it after our first appt. with ESAM (Epilepsy & Seizure Association of Manitoba). Phyllis spoke to us and made both Dennis and I feel like we werent crazy about all that we have seen over the last 3 years! She agreed that Sam probably HAS been having AT LEAST partial seizures all along (since his accident in 2008). She told us that the shaking of his arms and legs are all partial seizures. She told us that we will need to make an IEP (Individual Education Plan) for him at school  so that it works with his seizure activity. Phyllis offered to come to the school meeting for this to help us to get the teachers to understand that this is SERIOUS and not just us.
We also learned that with dietary changes we can work on reducing the seizures. Adding a few things to everyones diet and eliminating other things will help Sm and give him the support needed. (this is going to be a tricky one since he IS 15 and knows everything... and does NOT want to lose the sugar and salt from his diet!)
I had done a bit of research before going in to talk with ESAM and found out that there are service dogs available for people with epilepsy. The dog can be trained to do quite a few things like getting help, alerting Sam to a seizure coming, keeping him safe during a seizure. So I asked about this and Phyllis said "YES! Start that process now! It is a 2-3 yr process to get a service dog so start now!" (side note -- if someone would have listened to me in the last almost 3 years we could have almost been to that point of receiving a dog -- **sigh** but I am over it now!lol) So I am going to be busy on the phone with the local Lions Club to see about getting it all started.  They can help to get the funding for this around $22,000.00 for the dog!
So after over an hour talking with ESAM and learning all we did and collecting a TON of info to bring home to read ... we left for our doctor appt. with the ped....

That where things went a bit ... out of my loop.

We were talking with the Dr. and he seemed a bit put off that we had been to ESAM. (too bad for him) and then when we asked for a referral to an adult neurologist -- these 2 are also epileptologists who are specialized neurologists (and I gave him the names of the 2 we would like to see -- names we got from ESAM) he seemed a tad miffed that we were calling shots. (again too bad for him) When I tried to ask WHY we have not see a neurologist he never really answered me. He was not too concerned with Sam's partial seizures or helping us to get things set on a more seizure free path-- other than taking his meds. (which are now up'd) Sam has also been sundowning much more earlier than in the past 3 years now that he is on these meds and even more so now that they have increased the levels. So he DID tell us to switch up the dosages t 3X a day instead of 2. (he will take 2pills 3X daily instead of 3 pills 2Xdaily) and he hopes that will help with that issue.
We informed the doc that we had not heard from the neuropsych yet or the sleep lab and he basically seemed to indicate it was out of his hands...but he did get me their number to call and see where things are going with those areas.
He finally agreed to send a referral to our first choice of neuro/epilep but warned us that if Sam has another seizure we will we sent to Wpg and they will put him in to the Childrens Hosp. and we will see a ped. neurologist.

When we left the doctors office I was more confused and frustrated... but I am praying that NOW finally things are moving in a right direction.

We had a very unexpected phone call when we got home from Winnipeg but right now I can't say anything about it as I am not sure what it will all do or not do for us...

seizures are not fun

5:56 am

9:52 am

4.40 pm

1 minute to 1.45+ minutes 

These were the times Samuel had seizures yesterday and for how long.

They started early in the morning at home and continued the rest of the day. 

They were full clonic tonic seizures just like before.

The change this time was there were 3 in less than 12 hours, he took longer to regain consciousness and he was throwing up the first 2.

Our family doctor got thru to our Winnipeg doctors and it was decided that Sam’s med’s would be increased (thankfully we had room to move there) and that only if he seizures again after this will we go to Winnipeg.

I think it started because of our Thursday trip to Brandon. We left before 7am - which is Sam’s morning time for med’s and I didn’t have any in my purse (not sure where the bottle went that was in there) so we had to wait til we got home to take them -- and he did at 7. It was a quiet evening all round and everyone went to bed fine. But that missed med at 7am could have been the culprit. 

Then when the seizures started before 6 am and he started throwing up, there was no chance to get another dosage in to him. The nursing staff gave him some gravol to try to settle his stomach so we could get his meds and something for the massive headache he had -- but the seizures continued. Even after he got his dose.

Just before 10 am he was sleeping in ICU and another one started. More vomiting, and longer to recover. So the doctor called to Wpg and got some advice. Next time he is to go to Health Sciences.

Fast forward to 4.40  pm and I am on the phone with Isaac -- who is at home. I thot I would get him to pack some things into a bag for me incase we had to head to Wpg and as I am talking a nurse came to get me and tell me Sam was seizuring again. This time no vomiting (thankfully!) and a bit quicker recovery time.  Then Winnipeg decides to have Neepawa work with his med levels first (increase them) and if that doesn’t work then he will go to Winnipeg. 

I am not too sure how I feel at this point about this all. I understand that Winnipeg doctors will be doing the same thing there as they are here. My concern is if he continues on this seizure path how much more damage is happening to his brain? Each seizure is a bit more damage done to it. Our doctor says that the ‘only damage being done to the brain during the seizure is lack of oxygen’.... only.... not a real instiller of confidence at t his point for me...

So Dennis and I stay the night at the hospital in Neepawa and try to sleep. Both on edge and not really sleeping -- but ready, in case we are awoken by Sam’s alarms going off that he is having another seizure. 

It is now 6am Saturday morning, trying to record it al for the blog...
... and my sanity...
I have been awake since before 5. 

I am tired. 

I feel grubby. 

I need a coffee and my book. 

I feel like I have been run over by a truck.... 

but Sam didn’t have any seizures so our night was good

I can see the sun making all the flowers and grass glisten in the garden behind the hospital... and I will take it and work to make it a wonderfully beautiful day.

normality!?

WOW! It is so hard to believe we are into summer already! The grass is green and in need of being mowed, the flowers weeds are blooming in my yard and we just dropped Sam off for cadet training yesterday morning -- 3am -- for 3 weeks in Penhold, Alberta. I miss him already!

Dennis and I were talking last night -- discussing our kids and I had noticed but not really how much of Sam's wit and humour had returned. (sometimes it takes someone to point something out so you can see it) There is no longer an awkward pause or a crooked (and somewhat sad) smile on his face anymore when a joke or sarcasm  is used. He usually gets it fairly quick and is just a fast in his smart assed retort. I know that for some people that is not what they would necessarily look for in thier kids but that is who Sam was and is coming back to. I can honestly say too that I miss it-- the humour and wit not the smart assed-ness☺. But things are starting to come together for him. The doctors did say that it could be 2 yrs or more before there is a semblance of normal.... and guess what... we are closing in on that 2 year mark. Sam will be in Penhold for that date but its all good.  Life is getting to normal -- or as close to normal as we can with all the teens and hormones in the house!

We finally got a response from the ENT in Winnipeg (for Sam's sleeping issues and nasal passages) and it is set for Sept 8, then I got a letter from the stomach doctor for me and I am having another stomach scope (I forget what it is called at the moment) on Sept 15-- in Winnipeg. So there will be a lot of time spent in Wpg in Sept it seems... ugh. Still no news on the neurosurgery for the plate for Sam... maybe soon.

This past week (10days actually) my aunt and 2 of her kids are out visiting from Newfoundland. Zach is in the reserves and was in cadets (and seems to know A LOT about military stuff), he and Sam seem to get along fairly well.  I am sure as with every other parent in the world, you wonder what your kids will be like and what they will do when they are grown and have left home. Which makes me wonder if after talking to Zach this week Sam is interested in the reserves or military-- hmmmmm, guess Iwill have to wait...just like everyone else☺