Another great day for Dan.

It must have been the Burger he ate for dinner the night before.  :-)
With a nice and full stomach he slept very well.  Up until some cracker jack prank called us at midnight.  Oh well, we moved around a bit and right back to sleep we went.  I thought I would feel rested, but I actually felt worse.  It's OK, it too shall get better with time.  Dan's also sleeping better since his parents picked up a water pik to clean his mouth.  The right side of his face is still very weak and it holds on to things.  Another problem solved!
we walked around and even attempted to sit by the pool in the shade.  A cold breeze, a loud Hwy and construction next door sent us packing fairly soon after we got there.  The change of scenery was nice.

Neither Dan or I can say how excited we are about going home.
Tomorrow we will be happily doing laundry and packing up to come home on Sunday.  Well at least Dan will supervising well I work away. :-).  :-)  

The boys really need us and we need them.  :-)

11 days after the surgery today, can you believe it?
We still have a very long road ahead but when you see the amazing changes everyday there is comfort.

Thank you God!!!!!

Home soon!

Looks like we have the go ahead to come home!  YAHOO! :-)

Dr. S thinks we all need to be in our own environment, and I say heck ya.
He figures once Dan gets home he will sleep better, and that we have all been contained long enough.
We are aiming for Sunday.

 Dan says he feels like he's on the mend.  I have to tell him to stop thinking about all that needs to be done at home, with time I will get it done.  If you know Dan you know that he doesn't really like to sit still and one thing for sure is that he loves working around our property.  We where joking around saying that if he wants to be apart of the outside work I am going to prop up in a comfy chair under a tree and he can watch me work away.  No lifting anything heavier than 5 lbs for at least 4 weeks.

One day at a time, we still see a difference in him everyday!
It is such a miracle!!!!!

Good day!
Nothing to do but relax.  By far Dan's best day post op.
Praying tonight will be the night he sleeps.
We are so excited to speaks with Dr. S tomorrow.
Can't wait to get the go ahead to go home.

One week anniversary......
I can say that was one blurry week.  It seemed to have gone fast though.
Fairly uneventful yesterday and last night.
Sleeping is still really tough.  Dan had really bad pressure in his head last night.  I was able to clam him and get him settled in the head for the first time in days.  I used what seems like a million pillows to prop him up just right.  Pillows are great and all but lose form fairly fast.  I was fairly determined that Come hell or high water Dan was going to sleep, well!!
I used my body weight to hold up the structure I had built around him.  That was fun, but it was working.  What can I say?  I was getting desperate.
Luckily enough I had arranged for his mom to come "relieve" me at 5am.  By then I was beyond tired but I knew he was resting comfortably.  Once she got here Dan and I had just been chatting a bit before.  It was obvious he wasn't in as much pain and had slept. Thank God!!!!
I was able to crash until just before 10 am.  Not sleeping at night for this week reminds me of when the boys where born.
I didn't sleep well but at least I could just lay there.  From what I understand he ate really well and went for a walk out in the courtyard.  Now he is resting up because the physical therapist is coming again and is going to work with him twice today.

Well it was a fairly good night.  Dan's getting' kinda bossy due frustration but in my eyes it means he is feeling a bit better.  Nights are so long when you aren't sleeping well.
7am Sharpe I was ordered to get breakfast. :-)   :-)
Wow did he eat.  Even had a few sips of coffee.
We skyped with  Dr S and the doctor was amazed to see the change in hi facial nerve. It will still take up to 3 months to gt it all back. It is all going well.  I spoke to him about the Sleeping issues and he gave me the go ahead to bring Dan down to one wedge.  Let's hope this helps.  I swear if Dan was sleeping more he would be doing even better than he already is.  #baby steps
Physical therapy is set up for this afternoon so we will see how that goes.

Bad night/morning.
I had to make an call to the doctor at 4 am.  Dan had vomited twice and this was painful and scary.
Doc said to stop using a nose spray medication he was on and then said he'd all me later.
At this point I really felt no better about the situation but I was able to get Dan calmed down and comfortable enough to sleep.
When he woke up he felt weaker than ever but o.k.
I was just about to give him some water when Dr.S call.
Don't give him any water!!!
The nasal spray he was on retains water and most likely Dan is suffering water intoxication.
It will take 24 hours to get out of his system.  He is to eat salt, salt and more salt and pee pee pee.
NO WATER!
So chips it will be.

Once we knew what was going on we all felt a lot better. Dan almost immediately looked better.  Amazing what a little bit of knowledge can do.
I brought Dan outside to sit in the shade for a bit.  He did very well considering he has been very sensitive to light and sound.
The nurse has been again and once again very thing looks good.
I wish I could curl up and sleep the rest of the day away, Dan too.

So after a nice leg and arm massage Dan is resting peacefully once again.  I could do without the craziness we had going on but we knew there would be highs and lows.

A quiet day.
The nurse just popped by and checked everything out.
She was very happy to see Dan doing well.  All vitals are good, clear lungs, no clots in his legs, and incision looks excellent.
What I thought, but very nice to hear from a RN. :-)
Not sure Dan believes me all the time :-)   :-). :-)
She gave me some little tips on how to make sleeping on the wedges more comfortable, which is great.

So we will continue with our little walks to work on balance, our naps, and our eating and drinking.
All things we take for granted while we are healthy.

Apparently to quote Dan "your voice is grating on my ear nubs!
(Monster vs Aliens)
"Well not just yours Jen, everyone's!"

Ha ha, sure sure!  :-)

Day 3 Post-op

Busy day today!
Dan is doing well.  The proof?  They have sent us on our way.  So after a morning full of instructions (for me) Dan received his last dose of Factor 8, was fed lunch and off we went.
The nurses and staff were unbelievable!  We will miss their care, and they made us promise to stay in touch.  :-)

Hopefully Dan will sleep (for a long time or at least until I have to wake him up for drugs).  It is so nice and quiet at the hotel.
Not sure I will sleep much being the first night out of the hospital but you never know.

Let's pray he continues to progress as he is, slowly but surely.   He was a bit sad today because he really misses Jacob and Nicholas (me too!).
However we understand they are having a blast and that makes us happy!  :-)

Good night.

Day 2 post op

Here we are day two after the surgery.  

Last evening was a bit rough.  Dan's blood pressure was too high and he was having anxiety attacks.  Most likely due to a steroid they have him on.  As much good some of these drugs do (Ex: reduce swelling) they cause other issues.  He can't sleep at all because the steroid jacks him up.  It's OK!  There will be plenty of time for sleep later.  Nurse Cheryl and I got it under control and it was a fairly quiet night, even though he didn't sleep much.  :-) 

Today has been a busy but good day.  

Swallowing has become a bit better so he has eaten as much as he can, they really want to eat a lot.  Ice cream, puddings, soups and so on.  His walking improves with every therapy session, he uses a walker until his balance gets better.

Slow and steady wins the race.

Great news:

1.  He hasn't had hiccups since early this morning

And

2.  Once he has his last dose of factor 8 at lunch tomorrow he will be released to go "home" to the hotel.

I am a wee bit scared but it will be fine.  Since the first night I have been doing a lot with his care.  He's an easy patient!!:-) 

Just a quick note.......

Dan has made it out of surgery alive.  Thank God!  Let's all share a collective sigh of relief.  :-) 

A little story to calm ones nerves......

Dr. S came to us after he was done.  He told us Dan was responding extremely well.  When he told Dan he made it out Dan gave him a thumbs up!  That's my Dan, even after major brain surgery with a major blood disorder his awesome sense of humour, strength and positivity shows up.   :-)    :-).   :-) 

We are not out of the woods by any means, the next 48 hours are very important.

Let's pray first and foremost that the blood continues to clott.  Let's also pray his head aches are managed with his medication.

He is such a strong man, and that is one reason I love him so much!

Again, I must thank you ALL for your positive thoughts and prayers, I can feel them and I am sure Dan can too!!!!!!

We are safely back in Thousand Oaks California.  Going home was a good thing.  Both Dan and I feel refreshed from our visit.  Our boys didn't even flinch when we told them that we hadn't been able to get daddy fixed and that we had to go back.  They had an amazing 10 days with my sister and now have another 10 day adventure ahead of them.  To say that Dan and I are grateful to our family and friends that are helping with our boys is an understatement!  :-)

We also want to thank everyone for their prayers and positive thoughts this far.

Coming back to California this time had a whole different feel.  First of all we feel a little like jet setters flying back and forth.  Can't say we've done this much moving about in a long time.  It all seems a bit surreal.
Dan has had some really good days, so this may sound strange but we are excited for tomorrow to finally be here.
We will be early to bed tonight because we will be at the hospital for 5 am.  The blood issue will be taken care of and the surgeon will finally get to take this tumor out.

Please pray for the surgeon and his team as well as Dan.
Tomorrow afternoon we will begin a whole different stage....recovery and healing.

I will keep in touch as we go along.

Visit

Tomorrow this time we will well on our way home.
We've decided to go home, visit with our boys and regroup.
It will be a good thing because if you know my husband then you know he can't sit still for very long.
He has been getting very antsy the last two days.
We've been taking it pretty easy here and California.  The weather is crazy hot!
If we were here under any other circumstances it would be an amazing vacation.  One day we will bring the boys to see how beautiful it is.  :)

We start out very early tomorrow morning with a 7 am appointment with Dr.S at TOSH.
He will be explaining to us how the surgery will be now that we know Dan has this new found blood disorder.  Then off to LAX we go.......

Mixed emotions.....so excited to see our boys but so crushed that we are coming back the same as we left.


One week until the surgery.  :s

Hello everyone,

So we finally got the blood test results back.  Dan does indeed have Von Willebrand Disease.

When “disease” is tagged onto anything is sounds pretty bleak.

Dan’s type is very mild/slight. 

With the research that we have done, Dan has not had one single symptom.

At this point we do not know if this was inherited or acquired.  Either way it is very fortunate that we found out prior to the surgery.

For more info see the link below:

http://www.uptodate.com/contents/von-willebrand-disease-beyond-the-basics

How does this affect Dan’s surgery? 

We have been asked to be admitted to the hospital one day early so that they can administer Von Willebrand factor into his body to help with clotting.  Then after the surgery they will do the same.

Over all everything is ok and will be ok!

We are still feeling very positive.

With all that being said the surgery is still scheduled for August the 21^st.  Which means we will be coming home (God willing) on the 28^th.  That is a long time from now.  So we have to make a decision; stay here and wait or go home and come back.

Lots of Love

Dan and Jen

Today was a long and crazy day. 
We thought it was wise to move closer the the hospital.  I of course would be staying right with Dan day and night in his suite at the hospital and the closer hotel would keep Mom and Dad close too.
Driving around here is insane!!!!!!  People are crazy!

So this morning we went to see the Hematologist.   We found out that Dan's blood abnormalities are slight, but problematic.  Clotting is not a efficient as it should be and considering he is having brain surgery that is not good.  He was sent to yet another hospital to get another blood test done.  The frustrating news is that the test takes 3 days to complete which mean surgery tomorrow is rescheduled.
The soonest they could reschedule is for the 21st of August.............................
This is a lot to deal with.  Obviously when we started all this there was a tremendous amount of effort put into planning everything.  Now there as been a wrench thrown into our plans.
Dan is very tired.  We have been very busy. 
The decisions that we need to make are weighing on our minds.
We miss our boys so much.
So as it stands we wait until Saturday to find out the results of the latest blood test. 
Surgery is now two whole weeks away.
Of course it is a good thing that we found this problem, better now than during the surgery.
However, we must way our options.  Do we stay or do we come home and go back later??
Please pray that we make the right choice.
Dan and I still believe we are on the right track having come here to have Dr. S remove this tumor.
Right now we just need to rest and take everything in.

Well it seems we have ran into a bit of a snag.  As I said, Dan had his blood work done this morning and it seems they have found something abnormal with his blood.   The surgery had been bumped to Wednesday.
Now we go see a Hematologist to figure out what is going on.  Let hope it's nothing!

Monday August 6th, 2012

Here we are in sunny California!!!!  It is so beautiful here!  I wish is was for vacation.  :)
I am sure some of you are.....  "What??"
Yep!  California!

As Dan was looking up the Neurosurgeon in Hamilton on the internet and a screen advertisement popped up for the SBI (Skull Base Institute).
It was a sign!
We looked into it and what it all comes down to is  a better out come than if he were to have the operation done in Canada.  The surgery is endoscopic which means WAY less invasive, less down time for recovery.
Canada considers this procedure experimental, even though Dr.S has been doing this technique that he has developed for more than 16 year!!!!!!
This morning we met the Doctor for the first time.  He and his staff are great.  Of course the meeting was A LOT to take in but good none the less.  
After that we had an appointment at TOSH.(Thousand Oakes Surgical Hospital)
A very nice facility that we will be stay in for the next 3 days.
Here we met Lily and her mother, two kind Vietnamese ladies. She saw my mother in-law and she was drawn to her as she said.  She felt she was sent over by God to comfort her and she told us she was going to pray for Dan.  Lily's mother did not speak English (she had to be in her 90's)but cheered to God (arm pumped in the air with a big smile, basically saying everything was going to work out just fine.  It was very sweet. :)  # Everything happens for a reason.

So as Dr. S instructed we are going out tonight for a nice meal and a glass of wine.
Tomorrow is going to be a long and hard day.......................................

So we find ourselves on a journey.  Learning tremendous amounts about ourselves, others and much more.
I came across a great saying after we found out Dan was going to need surgery....
"If God brings you to it; He will being you through it."
We've seen some amazing miracles in the past and I believe that prayer is what got everyone through it.
It has gotten us this far, so I thought I would get this Blog going so that our love ones and friends can follow along and continue to pray for Dan and his family.

I will start off will a little bit of background information so you can understand a bit more. Then I will (when I can) keep up posted as we move along the next couple of months.

4 years ago Dan, the boys and I were visiting one of our most favorite place on vacation.  Unfortunately Dan hit his head rather hard resulting in a minor concussion.  Our GP sent him for a MRI to check things out.
His head was fine, however they did find a growth called a schwannoma or Acoustic Neuroma.
A growth on his 8th cranial nerve that affects balance and hearing.
The Canadian protocol is if the patient is not showing symptoms is to "wait and watch".
These growths do not grow linearly we find out.  So that explains why the last 3 MRI's showed no growth and this last MRI shows the growth had doubled in size.
The tumor is now considered very large and needs to be removed because the larger it get the more it pushes on the brain and causes damage.
So far Dan is doing fairly well.  His balance is a bit off and his hearing isn't bad at all.