Sometimes people suck ...

What would YOU say if you found out that someone you loved and is in someone else's care and the one you love has been sick for over three weeks, has been to the local hospital for chest X-rays and is now going for a second set?

This is part of this other persons {to be fair there could be more than one person who has this job to do} job, to keep family {in my case ... only me} updated on your loved ones health issues and the like.

I got a phone message yesterday afternoon/evening from th care home where my daddy is taken care of and lives, asking if I could call them back regarding some,thing with my daddy. I didn't get my message until this morning and I called right away. I was informed that my daddy is going to the hospital on Monday morning for a second chest X-ray because his pneumonia doesn't seem to be getting better....

Excuse me?

His pneumonia?

Second chest X-ray ....

I told the woman I had not been informed of the first X-ray OR his pneumonia and we had just been in to visit last week and he didnt seem to be or sound sick.

She seemed quite shocked to hear this.

Like I said earlier, I am the ONLY person who needs to be called when things happpen.
I mean they call me about:

- holes in his socks and what should they do about them.
- missing shavers from his bathroom - would I know where they are?
- no batteries for a clock in his room.
- if I am shopping he could do with a new pillow.

 Y'all get the idea.

For the most part, I absolutely love where daddy is. He gets fantastic care but wonderful staff.
But sometimes when it comes to big ticket items {insert almost any issue here} they really drop the ball. This is NOT the first time this has occurred either!

Dennis and I were on our way out today to do some grocery shopping and whatnot, so we stopped in to see daddy, and his chest was quite rattley with lots of moistness in it, so I am glad he's going to get another X-ray. I AMA little concerned about the medications they have Him on not working, but he is in Gods care and He knows what is needed to get daddy on the mend, if that's His will.

UPDATE:
Daddy went for X-rays yesterday and the pneumonia is definitely back and more in his right lung. SO a new and stronger medication and a nebulizer every 2 days (because the medication can do damage to his kidneys -- it never rains but pours right!)

We will be back on Wednesday to check in and see how he's doing.

Daddy just looked so tired and small. How can someone who was such a giant in my life be reduced to looking so small?

I can't make this stuff up!

waiting to see doctor in hospital 

I am not kidding, I can't make this stuff up! Our life gets crazier and crazier...
Last Tuesday I worked at a local Colony in the morning and came home at lunch time and went for a walk around 2 pm. I just began interval training for running, I decided to run the interval timer the entire 21 minutes and then walk the road back.
I got almost a mile and a half from the house, when my phone rang and it was Denis telling me that he needed my help, he was "caught in the post pounder" and he had "already called 911".

I tell you about the running part because I had ran most of the 1.5 mile and now I was that far from home and had to run back...
I started running back to the yard to help -- unsure of what I was going to find when I got to Dennis -- and as I ran I called our neighbour to see if they were home and could come and get me so I could get to Dennis faster and so I had help with whatever I was about to encounter.
Luckily,  they were home and were able to come to get me immediately. Corey started the tractor so we could start the post pound and release his hand which is what was caught.

Sam showed up then and we got Dennis into the car and met the ambulance on the highway so they could take him to Neepawa (which is where they wanted to take him, possibly assuming that his hand was severely damaged and would require further attention in Brandon or Winnipeg).

{Dennis had been making new rubber pads for the post pounder and had thought to put a brace in so that it couldnt slam down and hurt him, but somewhere in-between thinking it and walking back into the shop, the thought left him and he made one rubber pad and then tried to fit it on and he must have leaned on the pounder lever and caused it to slam down onto his hand...}

Once we got to the hospital and xrays were taken it was discovered that there were no broken bones!! Hallelujah!! God is good! The doctor thought that it is a good possiblity that Dennis' wedding ring saved his finger from more severe damage! But there is concern that the knuckle of the finger may become a "boutonnière nuckle" -- so he has to keep it straight for 2-3 weeks.  If it bends at all in between that time, he has to start over from the start.

Concerns about Boutonniere Knuckle

The wedding ring that possibly saved his fingers! 

He has 3-4 stitches in the base of the finger, which we have had looked at by our doctor and it turns out the finger was wet, too wet in fact. SO wet that the stitches were not even really doing anything. We had it redressed and on Saturday we went in to have it reassessed at the local hospital and the nurse or aid that dealt with Dennis didnt listen to us (we repeated ourselves a few times about the injury and what we were supposed to have done) and they still did stuff we discovered this morning when we changed the dressing  that the stitches and the finger were wet again...
Dennis is also concerned that there is no real feeling in the ring finger or the middle finger. So we are hoping to see our doctor this week to address this issue and have stitches removed if possible.
Here is Dennis almost a week after the accident...

I am worried about this all as we are now into our busy season (calving starts in a month) and Sam is also going for a stress EEG tomorrow. Josh has been sick with something in his chest, Hannah has been sick with a cold and has started Driver's Ed, Isaac's grad and the school play he has a lead in is coming up -- all 'minor' things I know, but they all add up. I am getting so tired and frustrated at myself with things. I have been trying to lose weight and get healthier and my stress levels go up, so that isn't helping the weight stuff... which doesnt help the stress levels... all catch .22  ... and I have also been feeling sick and just  'not well'... I am just so tired

I know this sounds incredibly selfish (espeically after a 3 week dream vacation in New Zealand recently), but when do I get to be sick, when do I get to stop running around being over tired? when will someone look after me...

like I said, selfish I know...

rant over...

the difference a day makes...

It always amazes me how small my boy looks in these damn hospital beds. Sammi is at least 6'1" yet when he is in the bed he looks so small and frail.

Yesterday I was up earlier than usual and thot I would start my day 'relaxing' watching the mornig news (something I dont do very often anymore as our TV is in the basement rec room) with my coffee. I came up to the main floor just before the kids usually wake up and sat down to go over my list of 'to do' for the day and Josh came down the stairs saying Sam wanted me.

I was not alarmed as when hSam went to bed he was in fine spirits and healthy .... so up the stairs I go and find him not only sweating as if he had been working out  and the bed sheets soaing with sweat but he was red and a bit 'outta it' (note to self: BUY A THERMOMETER!!!).  Dennis and I got him in the shower, 2 tylenols, a litre of water drank and back to bed. Josh told us that he had heard Sam get up and down all might (I had too but assumed he was getting up to go to the washroom because the boys had drank some gingerale before bed -- and I didnt hear any throwing up or calling for us...) Sam informed us that he was up because he kept feeling like he had to pee but couldn't.

 This made me call the hospital.

They recommended that we bring him in as he is at risk for seizures.I took Sam to the hospital and they took his temp and it kept fluctuating up and down for the entire time we were there, but we got him cooler than when he first woke up. They did got a urine sample from him and blood work to find that he has a severe bladder infection (his white blood cell count was at 19000 and it should be around 11000) and his urine was full of infection. The next job then was for the medical team to find meds to get rid of the infection that would not interfere with his seizure meds...

Thankfully they found one and with the meds and rest Sam will hopefully be noticeably be feeling better by Saturday noon-ish and without a fever. If the fever persists and he is not able to pee or isnt feeling better we need to take him back to the hospital.

Praying he is better today (at med time he was not fevered and said he was peeing a bit better so that made me happy) and continues to get better -- because did I mention that Dennis and I have a holiday booked that we leave for to Jamaica on Sunday? Not going to be able to go or relax if I know our boy is still sick...

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...

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.