Back to Work!

Well I finished my first full week back at work and I have to say I feel great! I finally feel like I getting back in the swing of things. I still feel numbness in my face but it is moving more and I am starting to see a smile. It is hard to believe it has has almost been 6 months since my surgery. Have a good weekend everyone :)

Grey's Anatomy - "Really? Was that how it was?"

I have finished my first week (part-time) and I have to say it went by fast. It was glad to see everyone! It is going to be awhile before I get back into the swing of things but I felt pretty good none the less.

Jen and I are fans of the show Grey's Anatomy and this weeks episode featured an acoustic neuroma patient. Dr. Shepard (McDreamy) was supposed to work on him months ago but he had crushed his hand in last season's plane crash episode and had to go through rehabilitation. Now the patients situation is imminent. It was great to watch as I felt a bit famous but of course a bit sad, In an effort to "hollywood-ize" the story they got the facts wrong and left alot out. So I will try to explain as best I can using my personal experience and research.

The tumour was referred to as "large" but they did not say how large. Normal protocol is depending on the patients age / symptoms / tumour size is how they go about treating it. The care pathway from the acoustic neuroma of Canada website is here: http://www.anac.ca/node/72#overlay-context=node/72

"Large" probably meant it was larger than 2.5 cm in size and the reason they decided to operate is because it was starting to press on vital structures like the brain stem. Things like blood pressure and heart rate are regulated through the brain stem so it is pretty important that they are not interferred with. Having it radiated would have been out of the question due to the tumours size and the patients age. A possible side effect of radiation is radiation induced cancer and it not a side effect you want to deal with at 30 but say if your 70 you might consider it.

Monitoring the facial nerve during the surgery was done. This is done since the facial nerve of the affected side runs close to the 8th cranial nerve. When the tumour grows, it tends to wrap itself around the facial nerve. The neurosurgeon needs to carefully pull the tumour off the facial nerve. The facial nerve is monitored to ensure the surgeon doesn't damage it while he is resecting the tumour.

If you looked at how the patient was lying they were probably using an approach to resect the tumour known as the "translabyrnth" appoach. If this was the case, they got it wrong. There has to be two surgeons to do this appoach. The neurosergeon and neurotologist (ear surgeon). It's my understanding the ear surgeon opens you up and neurosurgeon resects the tumour.

After the surgery he had no facial droop. If the tumour was touching the facial nerve there is going to be some droop. From what we saw on the show it was covering the facial nerve. If the nerve wasn't damaged the facial droop will go away. I have personally met with several people who have the procedure done different ways and they don't have any droop. The thing is it took months if not over a year or longer for the droop to go away! I am over 5 months recovered and it is going away slowy....

After the surgery he sat in his hospital bed and he looked alert and his sister said "Oh my gosh" you can hear! Well of course he can hear, he still has the other ear to hear out of! One of the most elusive things with this surgery is the preservation of hearing on the affected side. I spoke to several people who had acoustic neuromas and they told me get used to only hearing out of one ear. There are several factors as to why this is so (location of tumour, approach used resect tumour, size of tumour, etc) but it is what it is.

Like I said before, it was nice to see that it was featured in the show but the experince is a little different then they portayed it :)

If you would like to know more about acoustic neuromas, check theses links out:

http://www.anac.ca/

http://anausa.org/

http://en.wikipedia.org/wiki/Acoustic_neuroma

http://www.skullbaseinstitute.com/acoustic-neuroma/

Going back to Work!

Well I have healed up enough to go back to work (at least part-time) and I am quite excited. I have decided to give Jen a break from writing and contribute a post. My journey is not over yet, but I will try and update the blog as much as I can from time to time. So much is going on right now, it is hard to keep up, but one thing I have learned through out this ordeal is no matter what is happening, be positive because life can be so much better if you take the situation and frame it in a positive light :). I have also learned to expect the unexpected, you will never be disappointed!

I just want to thank everyone for their well wishes and we will talk again soon......

Cheers!

Dan

Went for a visit...

Last week Dan's GP suggested to "test the waters" and give driving a try.  Again the main issue we are still dealing with is Dan's right eye.  It's still a bit droopy, very dry and there is still not much blinking action.
We've been to town and back during the day without any issues.  A short 8-10 minute drive from home. 
We tried a night time drive once and I ended that fairly quickly. 
"I WANT TO LIVE, I WANT TO LIVE !!!  PULL OVER!"  is what came out of my mouth (so Dan says!!  lol)
The bright lights where too much, not a big surprise.  Every time a car came toward us Dan started to veer to the shoulder.  A wee bit frightening.  It's hard to say if he's driving worse because I had "concerns" before the surgery when Dan drove!  ;)  Don't get me wrong he is a very safe driver however........

So today there may have been a few sightings of Dan at work.  The drive is fairly long so the doctor suggested we have Dan drive to test it out.  Today was a challenge to say the least.  We drove in a full on rain storm which wasn't too bad, it was the defrost blowing that was need to keep the windows defogged.
Dried Dan's eye out right away.  Not much we could have done about that.  Normally in windy situations he would wear his eye patch, driving like that would probably not be a great idea.

It was very nice that Dan got to see some of his co-workers!  :)

All in all we still have a few hurtles to get over before Dan can safely return back to work.
We're still chugging along. 
Yesterday I actually stopped and reflected...wow WE'VE come along way since August 21st.
What a miracle!

I would like to share something I came across today, it's a bit surreal.  Everything this woman says Dan and I have said as well....powerful and VERY TRUE!!!!!
A GIFT!


http://www.ted.com/talks/stacey_kramer_the_best_gift_i_ever_survived.html?source=email#.UIcCGNrxs4d.email


What do you think about that???  It is 110% true!

HAPPY THANKSGIVING!

Dan with his beard.  Just under a week after surgery, sitting with his walker getting a few minutes of fresh air.  Resting up to walk back to the room.

Two weeks after surgery at home.  The boys just couldn't resist the hat.  Dan wears the patch to protect his eye.

Here we are 6 weeks after the surgery.

Dan has graduated from his cane and is walking around on his own. 

Physiotherapy 3 times a week is helping Dan with strength, endurance and balance.

Strength - His right side is still weaker but it is getting better. 

Endurance- Mornings are very slow due to aches and pains and by early afternoon he needs a nap to get through the rest of the day.

Balance- It is better but not 100%, (dark and uneven grounds are not Dan’s friends) we laugh a lot as he must look like he’s had a “few”.  Laughter is the best medicine.  J

We have been visiting our Doctor every two weeks for checkups; he has not got the ok to drive because of his balance issues and occasional double vision (tired). 

Right side of face is still asleep! He is being patient since the surgeon did say it could take up to three months to get it all back.  Most of his irritation comes from his eye.  Because his right eye can’t blink it is very dry.  Eye drops help with ensuring his cornea isn’t scratched causing permanent damage.  Dan does not like wind!!!

With the Thanksgiving weekend upon us it seems to be an understatement to say we have a lot to be thankful for this year.  For myself I am grateful every day from the time I wake up until the time we all go to sleep at night.  Thanksgiving Day is just a day to celebrate all that is great in our lives with family and friends.

THANK YOU ALL for caring.

We hope you all have a great time celebrating all the great things in your lives!

Happy Thanksgiving!

So it has been three weeks now since Dan's surgery.
Everyday his balance gets a bit better.  He has graduated from a walker to a cane.  Today Dan started physiotherapy.
They have him set for three times a week.
The doctor would be very happy that Dan is following his recovery rules.  He is getting a wee bit grumpy/frustrated.  Like I said before Dan doesn't like to sit around and do nothing.  Physio will be great because he can't wait to get back to working out again.
His eye still bugs him as does drinking from a cup.  A couple more months and these things won't be an issue.
Our oldest son loves to rub Dan's right shoulder.  His whole right side is stiff.

 Over all we are on the right track.  Patience is no longer his strong suit which makes me giggle.  He is human!!!!  :)
That too will come back I am sure.  :-)

Busy days.

We came back Sunday afternoon.  With a lovely greeting from Dans siblings and their families.  We had some dinner, and it was great!


Monday night my family brought dinner over.  All in all everyone just wanted to lay there eyes on Dan to make sure he was truly OK.

We have been home for two days now and it's heaven!  :-)
Dan is sleeping great in our recliner and continues to get stronger.
The boys have been amazing with their daddy.  I am so proud of them.  They have always been very compassionate boys.
Today we went to get the staples out and it went very well.  The incision looks fantastic.  Our GP was really amazed how well Dan looked.  If you think about our other option of having surgery done in Canada Dan would have only just gotten out of the hospital. (8-10 days)
We are blessed with the procedure Dan had done, especially with the severity of the situation.  He truly is lucky to be alive.

Tomorrow we look into physiotherapy.
 Also, I've been informed...."the beard is coming off"!
lol
I think he looks very handsome.

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