Friday, April 12, 2013

8+ weeks later...

Our 8 week anniversary has come and gone.  This is a definite cause for celebration as Dan is doing so well.  The surgery already seems so far behind us.  The meningitis scare and subsequent second hospital stay feels a little more 'raw' as that whole experience was 10 times more traumatic for the both of us.  Even still, seeing Dan feel better than he has in a long time is so awesome and amazing.  The daily problems that the tumor was causing was affecting his overall quality of life more than I realized.  He now leaps out of bed in the  morning -pain free.  The deep side splitting laughter with friends and family no longer sends a shooting pain through his head.  Thinking about taking a long walk, hike or bike ride now sounds appealing instead of agonizing.  We are looking forward to many things without having to worry about a migraine or vertigo ruining our plans.  In the best of ways, it's almost like he is a new person.

Word spread very quickly about Dan's tumor and surgery and the loving support that came from being so open about his diagnosis has really kept our heads above water.  Every time we see different friends for the first time they can't believe that only 8 weeks ago he had brain surgery.  His spirits are high, he looks great, and all of us couldn't be more thankful that things turned out as they did.

In a recent talk we heard, it was said that people who have gone through trials are often the most pleasant people to be around.  They have empathy and fellow feeling.  A type of understanding that can help comfort you.  Never having had gone through this kind of trial before, we couldn't agree more.  The whole journey from the diagnosis, to surgical consults, to pre-operative work ups, to a last minute second opinion that lead to emergency surgery - has helped us to become more understanding of the stress, anxiety, and sometimes utter paralysis that can come from enduring a health challenge or any other challenge for that matter.  Being here at this end of the journey has left us with a true sense of gratitude for all that we have been given.  It almost makes you speechless.

Life has taught us lots of new lessons.  We were fortunate to have such a good outcome.  However, I can honestly say that through all of what Dan has been through he had such an amazing attitude that I can't help but admire.  He never felt bad for himself or asked, "Why me?"  He endured through it all and kept a content and optimistic attitude.  I think it was this positive attitude toward his trial (and maybe one ounce of pure I wrong??) that got him through it all.  No matter what comes our way it's my hope that we can hold on to this same mental attitude.

"The greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances."
 - Martha Washington

Sunday, February 24, 2013

Home, Sweet Home

We were able to get discharged today. Dan ended up being diagnosed with what the doctors call 'chemical meningitis'. It isn't the scary, contagious meningitis; but an inflammation of the meninges (lining surrounding the brain) caused by the trauma of an 11 hour brain surgery. Initially he was on steroid medication to reduce inflammation but had tapered off of that Monday. Wednesday we were back in ER. So it seems like he just needed to be on the steroids for a bit longer. He's continuing the steroids and is on some medication to reduce pain which can all be managed at home. We are headed back up to LA to see the surgeons for a post op follow-up this week sometime. Dan is happy to be home and I'm glad to have him home. The only thing is this hospital stay was a little more unsettling and traumatic than the last one. The uncertainty about what was causing the pain, coupled with the severity of the pain was worse than anything we've experienced. Nothing prepares you to see someone you love in severe pain and not be able to do a thing about it. We are both looking forward to that big sigh of relief when this whole situation is a far and distant memory.

This whole experience has given us a lot of empathy for all those people dealing with persistent and chronic pain. We can't wait until Jehovah 'the God of all comfort' (2 Cor 1:3) will cause pain, tears, and sorrow to be a thing of the past. (Rev 21:4) All of these examples of human suffering will not even be called to mind. (Isa 65:17).

Dan and I have so many things we are looking forward to doing together once this is all said and done. We can't wait to start a new, fresh beginning together with all of this tumor business over with!!

Thursday, February 21, 2013

Watching, Waiting, Wishing

Good thing for smart doctors! After culturing some of Dan's spinal fluid to check for infection they found out....(drumroll please) THAT THERE IS NONE!

As boggled as our minds were, we are happy to say that 'possible meningitis' is no longer in our vocabulary. They are going to continue culturing to make sure but with no fever it seems like Dan's pain and nausea was a product of something else.

We got the MRI results back and everything looks pretty good on that side too considering he is only a little over two weeks post op. Doctors are thinking it could potentially be rebound inflammation since he is no longer on steroids that reduced swelling/inflammation after surgery. The neurological team will be consulted on Dan's case to try and figure out the pain he's having. We are happy they are being controlled with medication so most of the time he is pretty comfortable.

His appetite is in full effect which I'm glad to see! We will just have to wait and see what tomorrow will bring. A regular bed opened upstairs so we are out of the room in ER! We loved the nurses there but we are a little more comfortable now that we are upstairs.

Wednesday, February 20, 2013

A Bump in the Road

Another day, over and done! 18 hours from start to finish...Dan is much more comfortable than he was this morning as his docs and nurses are doing a good job controlling his pain levels. More antibiotics will be fed through his IV through the night to help his body fight off whatever nasty bug he's got in his system. Infection was always a risk for us, we just didn't expect to have it pop up 2 1/2 weeks post op. We figured if it was going to happen it would have already happened. I guess we were just getting so comfortable with things moving smoothly, that this kind of hit us in the same Mack truck way as the diagnosis! It is hard to explain but this bump in the road feels a lot more challenging to handle than that giant hurdle we jumped a few weeks ago. 

But like always, Morgon's fight hard! We are awaiting results of an MRI Dan received this evening and some culture testing they did earlier with his fluids. Happy to say farewell to this long, crazy day! 



Overnight Dan had some severe head pain and nausea which prompted us to make an ER visit around    5am this morning. The doctors here at UCSD La Jolla ordered a CT scan and a spinal tap (eek!) Brave guy, this one is!

Initial results of the CT scan don't show a huge amount of abnormal pressure inside the head but there is a high level of white blood cells present in his spinal fluid. This is consistent with some kind of infection, they just have to figure out what kind and how it got there.

Nurses are controlling his pain and administering some general antibiotics. But it looks like we are getting admitted for at least an overnight stay. We will keep you updated as the day progresses.

Wednesday, February 13, 2013

8 Days Post -Op Update

Being back home has been so nice!  We've enjoyed being in a much more comfortable setting and are getting much better rest here.  Everyday Dan has felt a lot stronger and is getting his energy back bit by bit.  He still gets fatigued pretty easily but we all enjoy watching his daily progress.  Walking has been his best therapy so far, but on Monday he outgrew making laps around the kitchen island and was ready to make the switch outdoors.  We had a great walk around the neighborhood and really enjoyed the SUNSHINE!
Me & Ray Charles Dan on our neighborhood stroll.

Initially Dan's jaw muscles were really sore because the end of his incision hits right where those jaw muscles begin.  Although he was hungry, chewing food was difficult.  Every day that's gotten a little better and we've enjoyed eating some of his favorite foods.  His taste buds just don't seem to be back to normal yet, so some of the food doesn't taste exactly right yet.  The facial nerve, besides controlling your facial muscles, is also responsible for salivating.  Since the tumor was very close to the facial nerve, it isn't a surprise that taste was affected from the trauma of surgery.  We are so thankful that his facial muscle control wasn't affected that much, but he's been a little bummed that some of his favorite foods aren't hitting the spot like they used to.  

The facial nerve also controls the production of tears.  We've noticed that Dan's left eye which was the affected side isn't tearing up.  For the time being we are using artificial tears to prevent his eye from drying up.  The taste issues should clear up as he heals but the tear production may or may not come back.  We just have to watch and wait.

Getting used to the complete deafness in the left ear has also been another adjustment.  He isn't having much of a problem with one-on-one conversation but in noisy environments where many people are speaking, he has a hard time discerning who is speaking and what is being said.  I'm also getting used to sitting on his right side so he can hear me.  Since he had already lost 30% of his hearing prior to surgery, I was already used to having to repeat myself from time to time. ;)  During car rides it seems to be more difficult for him to discern speech because of the noise and the fact that I'm on his left side as the designated driver.  Docs aren't clearing him to drive for about a month or so until the risk for dizziness spells and vision problems aren't a high risk.

Although he's really not supposed to have alcohol for 2 weeks post-op, he couldn't help but just have a sip or two.  

It's all about the small things.

Tuesday we went back up to LA for a follow up with a couple of Dan's doctors.  His Internist gave him an A+ and said that he looked good.  Then we headed over to the House Clinic to get his stitches taken out.  Initially Dr. Friedman said that the incision looked good but he would like to wait a few more days to take the stitches out.  Since we came up all the way from San Diego he didn't want us to waste another trip and so he decided to take them out.  Dan's stitches were called a 'baseball stitch' and really did look just like their namesake.  He had about twenty in total and they came out painlessly.  

His incision actually looks a little weirder and as we discovered attracts the attention of an older demographic....oh yeah, and has the ability to scare young children.  Yay!!

We are trying to enjoy a little bit of down time as much as possible but for all of you who know Dan, I have my hands full trying to hold this one down.
We have learned so many things so far from this whole journey - the value of a strong mate, the importance of good family and friends, and the power of a positive attitude & strong convictions.  We have gained more empathy for others going through health challenges and chronic pain and have come to know the power of a generous and giving spirit. This whole journey has been totally overwhelming and exhausting but on this side of things we can say it has been an invaluable learning experience that we hope can help others going through the same thing.  
To 6 more weeks of REST & RECOVERY!

Saturday, February 9, 2013


 After consulting with the doctors over at the House Clinic around 9am, we had the opportunity to have some of the best surgeons remove Dan's Acoustic Neuroma.  Dan was admitted through the ER across the street at St. Vincent's and surgery was a GO by 2:30pm.
The first day post-op, nurses had Dan up sitting in a chair eating soft foods.  Fortunately, Dan had no nausea or vomiting coming out of anesthesia and his appetite picked up pretty quickly.
 I love this picture.  It was the first real smile that we got to see and I couldn't help but be amazed at how great he looked. 
 Dan got moved out of ICU on Wednesday and in a regular room.  This was such a milestone!  The doctors just kept chuckling in disbelief about how great he was doing considering how large of a tumor he had.  Between the main tumor and a cyst that was connected to it, doctors had a 5cm monster to take out.  The tumor was causing severe brainstem compression and even the experienced doctors at The House Clinic said it was pretty challenging to remove.  But we got the whole thing!  We also found out this day that The House Clinic is going to use Dan's case for a case study to teach other doctors.  All the surgeons said that they learned a lot from Dan's surgery.  Another doctor mentioned that this was his best 'feel good' case in 10 years!  What a rock star!  
 Dan got right to his physical therapy which includes walking and some balance exercises.  He walked all the way from his room to the main waiting room on the 6th floor.  This is where we all anxiously awaited the good news from the Operating Room on Monday.  
 After getting the OK from all of his doctors, Dan was discharged Friday afternoon!  We couldn't have been happier to make the trip home from Los Angeles back to San Diego.  The car ride which we expected to be a little disorienting for him was great.  
 Here is a little video that I took during the transfer from ICU to a regular room.  Proof that the real Dan was back and ready to PARTY! ;)  Love this man.  

Here is a short video during one of Dan's first PT sessions.

Anyway, that's a little photo journey of our crazy week.  Surprisingly, we are headed back to LA on Tuesday to get his stitches out!