willandadri.com

I went back with Will and Matthew for a pre-surgery prayer session. Will found comfort in the calming words Matthew offered. I stayed with Will until the first series of anesthesia cocktails were administered and they took him off to another pre-op waiting area where the breathing tube and head confinement gear would be put in place. We were just paged again and informed that the surgery is now underway. We’ve been here since 9:30am and they tell us that Will should be done with his surgery and in the ICU recovery afterwards. Lots of nervousness and jitters were in place for both Will and myself this morning, but we know that God has everything under control and that we will have him resting calmly soon and on the road to recovery in no time. Thanks to everyone for your continued love and support. Will update you as soon as we get more information.

So as you may notice I am jumping around in the time frame a bit.  I decided to post smaller topic specific entries so they can be digested by the reader in smaller more meaningful chunks.  This will also help me work with my ADHD and ensure that I do not forget to post something important to me because my mind wandered off on a tangent as I changed topics.  You will also notice a common theme in most of my postings.  My emotional journey was very diverse and my mood could change quickly for no apparent reason.  Many people will feel this way and it is completely normal for what you are going through, I just tried to make sure I allowed myself to accept and experience these feelings instead of bottling them up.

So the day before surgery arrived and was met with both excitement and anxiety.  I was sad because we were leaving the beach and I knew I would not be returning until September.  I was excited because we were going to pick up Lori at the airport in the evening and it is always a blast visiting with her.  I also felt anxious because it seemed time was slipping through my fingers so fast.  I still didn’t really know what to expect for recovery from the surgery but it seemed as if each step we took (leaving the beach, calling the surgery hotline, picking up Lori at the airport) seemed to happen at a steadily accelerating pace propelling me towards the dreaded surgery as time passed in a blur with events happening merely in my peripheral vision.  I started to panic feeling as if I was not ready and not prepared but surgery was looming ever closer on the horizon and there was nothing I could do to make the situation any better.  I tried to simply hold on tight, keep all the pieces together, and not fall off the ride as we zoomed right along.

Shortly before I was to call the Duke hotline they called me.  I was requested to arrive at 12:30pm the next day to check in for surgery. While I felt very relieved to finally know when the surgery would be taking place, my anxiety level also increased as the whole experience was made more real.  We distracted ourselves by sending updates via telephone, Facebook, and email to notify friends and family of when the surgery was anticipated to start.  I then got online to look up Lori’s flight information and received a text message from her saying she was delayed just as I saw the delayed status online.  Her flight leaving Chicago was delayed and she was stuck on the tarmac at Detroit waiting for them to find another pilot as the primary pilot called out sick with the flu. I called the Pit and explained our situation and they were kind enough to allow us to bump our reservation back by 45 minutes even though their website said there were no more reservations available for that day.  We left and picked up Lori at the airport before continuing on to the Pit for a fabulous dinner.  More sadness set in once we were seated as I realized this was my last meal before surgery.  They were out of the beer I had wanted to try but I was able to select a 2nd one with no problem.  They also told me they were out of the meatloaf that I finally decided to try after eying it the past few times we came to the Pit but after I gave him the evil eye the waiter said he would go check and returned with good news.  We enjoyed our dinner and catching up and just being in this moment of normalcy before the unknown began.  Once we returned home it was time to take a shower using my own shampoo and some special anti-bacterial sponge provided by the hospital.  After the shower it was past midnight so I was no longer allowed to eat or drink anything and went to bed knowing I needed the rest but wishing that sleep wouldn’t make the next day come so soon.

So Duke just called and I am supposed to check in tomorrow at Duke University Hospital in Durham at 12:30 pm.  The surgery is anticipated to start about an hour and a half (so around 2:00 pm) after check in and last for 3 hours.  So if all goes well / according to plan I will be out of surgery by 5:00 pm.  Getting ready to pick up Lori from the airport (can’t wait to see her although I wish it were under better circumstances) and then go for a fun dinner at the Pit before beginning the pre-surgery routine.  Peace out!

Well unfortunately it has come and gone. We are packing up to leave the beach. It has been an interesting couple of days. In some ways amazing and in others not so great but I wouldn’t change it for anything. It’s times like these when you reflect and learn much about yourself and those around you. I have been humbled at times to see how many people I am surrounded with in my daily life that are so supportive and loving.

Friday night we arrived to the most amazing Birthday cake. Lori and Chris had collaborated with the cake people up the street, the beach house owner, and the handyman next door to make all of this happen. Not even Adrianne had a clue what was going on! We wandered out to see what was around and settled on a seafood bar and grill on the marina thinking we might sit on the dock and overlook the water. The food was really good and they had live music but not my scene. Once we actually got there I guess the weight of what was about to happen started hitting me and I just really didn’t want to be around people. I tried my best to have fun and enjoy the shrimp poboy that looked so amazing but I started having panic attacks and ended up just picking at dinner. We left and ended up spending a quiet relaxing evening in for the remainder of the night.

Saturday started out really good with a nice time on the beach, a couple of drinks at the Tiki Bar on the pier, and a wonderful Seafood (king crab legs) late lunch on the pier at Oceanic. It went downhill quickly after that. I got very dizzy and nauseous and was struggling not to throw up for a good couple of hours. Making matter worse I felt very tired as if I couldn’t keep my eyes open but every time I closed my eyes the dizziness got worse which made the nausea worse. Luckily by the time we arrived back at the house the nausea had subsided enough that I took a nap and felt better after that but we took it easy and hung out for the rest of the evening watching Ron White and other comedians on TV. By the time 11:30 rolled around we decided to head out to the HT for some ice cream to go with my birthday cake. We got home shortly after my Birthday and began the celebration. I got to open my cards and presents and got the Kindle I had wanted forever! It is great because it will be very helpful in the future allowing me to take all of my Oracle reference books with me instead of having to anticipate what I will need and lug around a lot of heavy books. It will also save me a lot of money because those books are typically $50 but the Kindle versions are only $35. It will also be very helpful now because it is so light I shouldn’t have a problem using it after the surgery. And even if I don’t feel up to holding and playing with it for whatever reason, it has a text-to-speech option so I could have it read books to me or download audio books to listen to.

Luckily Sunday was amazing and uneventful from a stress standpoint. It was supposed to pour down rain all day but as we got up and got moving it actually cleared up and had rather nice weather. We started the day at the Surf House which is a really cool little place. It has a surf shop on one side and a counter and set of tables / TVs on the other side serving breakfast and lunch. I had what sounds like a simple bacon, egg, and cheddar sandwich on a honey wheat bagel but it was probably the best one I have ever had. We then followed up with coffees from Port City Java before heading to the Aquarium at Fort Fisher. I haven’t been to the Aquarium in a long time (and never been to one in NC) and had been wanting to go for a while. We both had a great time and enjoyed ourselves seeing and learning about the various animals. We even got to touch a horseshoe crab and some corral. Adrianne was brave enough to pick up the horseshoe crab and flip it over to look and play with it but I didn’t want to have any part in that. After that we had a good seafood lunch outside and spent some more time on the beach in the sun at Kure beach. Another nap followed (for whatever reason I have been VERY fond of the afternoon naps this weekend) before we got ready and went to the most amazing birthday dinner. Wilmington was a very nice city and the waterfront was amazing. It reminded us both a little of Savanna and Charleston. We went to the little dipper for dinner and were greeted with a tank of Jellyfish as you first walk into the restaurant. The dinner was very good and here happened the only stressful part of the day which luckily only lasted for a few moments. We got a nice bottle of wine as is our usual birthday tradition but I had to stop drinking any because I noticed a trend. The more wine I drank the more depressed I became as I began to reflect on the coming events and how I was not ready for this weekend to end. So I focused back on the amazing dark chocolate and amaretto fondue and Adrianne did a good job of distracting me until it passed and I was back to “normal”.

So here now I sit typing this up as she is packing around me getting ready to leave. I am still not ready to go but I am happy to be taking some great memories with me. And like often happens in life I have many mixed feelings about returning home. I really don’t want to return home and end the vacation prematurely but I also want to go home and just relax and spend some down time before all the craziness starts. I also can’t wait to see Lori this evening and pick her up from the airport but then at the same rate that means that it will be time to call and find out when the surgery is tomorrow and begin my series of showers with the “special” soap. Uggh. I plan on writing one more post once I find out when the surgery is and then won’t be back on until I feel better after the surgery.

we’ve been busy folks lately and wanted to make sure we took time to post our stories, as well as all of the photos that document will’s journey over the past week.  we’ve been to the beach for will’s b-day, we’ve picked up lori from the airport, and we’ve spent the week at duke hospital in durham, and come home to get will on the road to recovery.  below is a photo collage of the past week.  we’ll get back to the written documentation as soon as time permits.

4/23

sometimes its a lot easier to understand what exactly chiari and syringomyelia are if you have some visuals to look at.  dr. lipton graciously detailed these scans of will’s most recent mri files so that we could all more easily understand exactly what we were working with here.

still amazes me how complex the human body is, and how all of this is normally perfectly functioning in most people. 

let’s all pray that the syrinx is able to dissipate itself very shortly after the surgery is performed.

its going to be interesting to see how our blogging develops with us both sharing our own individual sides of the same story.  mine always comes with photos.  i have the camera, so i take the rights to posting.  no, seriously though will did confirm he’d like me to take pictures of his chiari journey.  you know me, any chance to take photos and i am all over it.

will has said everything i wanted to say regarding the surgery and the processes we’ve been through thus far.  the only thing i would like to add is how proud of him i am.  its not every day that someone can accept, handle, and cope with the stressors of impending “brain” surgery with grace and dignity, but will has done just that.  i’ve always been proud of him, but this trial in our life has reminded me how lucky i am to be married to such an amazing human being. 

loving you.

I suppose during those really tough times in life everyone is prone to some internal reflection. It is natural to draw inward and reflect on your relationship with God and have regrets that you have not done as well as you could have and should have.  We all are fallen people.  As I drove in to work today I was again reminded how blessed I am to have such a strong support network going through these tough times.  A myriad of thoughts passed my mind and I just had to write them down to capture them before they were forgotten.

I may not know why this is happening but I am firmly convinced that God is in control and it is happening for a reason. I can’t fathom how somebody could go through something this tough without that faith and belief. Because of my faith I trust that God will take care of me and everything will work out well in the end. Because of my faith I know that even if everything doesn’t turn out well in the end God is in control, it will happen exactly as he has designed, and there is a purpose behind what happens.

I am also a firm believer that God uses trials and tribulations to draw us closer to him and that for those of us (like myself) who are very stubborn, the trials are often more difficult to manage.  I know that with my personality if everything in life were going great God would take a back seat and I would think that I do not need him.  It is sad to say that many people naturally fall under that category of only calling on God in great times of need.  I believe God allows these trials in our life as a constant reminder that we do need him.  2 Corinthians 2 : 7 – 9 have been my mantra in this belief.  In this passage the apostle Paul is quoted:

To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me.  Three times I pleaded with the Lord to take it away from me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”

This is a very powerful and loaded passage to me.  There has been a lot of speculation on what this thorn in the flesh is but that is beside the point.  While most of us may have not had a surpassingly great revelation, I believe we all suffer with one or more thorns in the flesh as a constant reminder that God is in control and we are weak humans who are in need of his fellowship, mercy, and healing.  It is a reminder that we are saved by grace not works and that it is okay if we are a mess.  To God we are a beautiful mess.  We will all fall down but we will be fine as long as we realize the important part is that we get back up and continue moving in the right direction rather than continue to lay on our face wallowing in our failure and self pity.  It is also a reminder that God uses the most horrible things in our life for his glory.  Certainly we should take notice when someone who has seemingly never had difficulty says I am truly blessed and God is good.  But to me the most powerful stories are those where people have a sordid and scarred past and say I was the lowliest of the low, not worth anything in people’s eyes, I have done horrible things, but God saw me and loved me anyway and has really turned my life around.  It may sound crazy to others but I believe that without weakness and tribulations our character is never truly tested and our witness is weakened.

I also believe that God has had a strong hand in these current trials.  Many may consider it coincidence but I consider it Providence.  I will give you just a few examples although I could really go on and on for a long time.  Before I was diagnosed with Chiari and Syringomyelia I was struggling with back pain and looking for alternatives.  My mother-in-law suggested a DO as an alternative to a chiropractor.  I asked my doctor about it and lo and behold there was a DO in her office although she informed me that they were very hard to find in NC.  Fortunately for me he did not do neck, head, and upper spine adjustments.  I did not know at that time but that would have been disastrous for somebody with Chiari.  I now know that if you ask a reputable Chiropractor to do a neck, head, or upper spine adjustment and they are aware you have Chiari they will refuse to work on you.  I have read the phrase “like throwing a match in a gas tank” in regards to having adjustments. The timing was also fortuitous as we are now beginning preparing to begin the adoption process.  I can’t imagine how tough it would have been on my wife if we had actually adopted a little one and she suddenly had to take care of both me and an infant.  Or worse if we were notified that there was a baby we could adopt but we had to turn down the adoption and put the process on hold to sort this surgery out.  I have no proof but also now believe that our previous miscarriages may be partially if not fully my fault simply because there is no proof but much evidence that Chiari is hereditary and many Chiarians have children with Chiari as well.  I can’t help but think it is not coincidence that our pregnancies terminated at the exact same week and day each time and it just so happened that this was during the beginnings of the brain development stage. Also the fact that I have not had the opportunity to take a vacation and have plenty of sick leave and vacation leave built up and that my wife works from home so she will be much better equipped to help support me post surgery is very helpful.  As I said I could go on and on about how all the pieces of the puzzle just have fit together perfectly.

I have also been very blessed to have such a strong and supportive Church family.  We are a small group but a very close, devoted, and supportive group.  If you are in the Durham area and are looking for a church family you should check us out at www.peacecovenant.org and www.facebook.com/peacecovenant. While I live in Wake Forest my surgery will be in Durham and the support and well wishes I have received from my Church and Work families has been humbling.

And lastly I will be loading up my iPod in preparation for surgery with some inspirational music from Casting Crowns which is my absolute favorite Christian group.  If you have not heard them before I would highly recommend checking them out.  I have always struggled in the past with thoughts that God could never possibly love me because I am not good enough.  At a particularly low time I heard my first Casting Crowns song “East to West” which was and continues to be a good reminder and immensely helpful.  When going through life’s trials their “Every Man” and “Praise You in this Storm” have gotten me through and continue to be my favorite songs to date.  Possibly because those are the first I heard or possibly just because the message in them is so powerful and meaningful.  At any rate I will be loading them up this evening to try and keep me going strong and positive throughout the surgery and recovery.

So I have been meaning to post for a long time now, not sure why I haven’t. I made a commitment to blog about my experiences with Chiari / Syringomyelia and the accompanying decompression surgery and recovery not only to help myself remember but hopefully to help any others who are diagnosed and find themselves as confused as I was. Luckily my wonderful wife filled the void with the background so I will just start with where we are at today.

I had my pre-op appointment this morning. A wonderful benefit (which I didn’t realize at the time) of scheduling it for early in the morning is that you aren’t awake enough to be nervous before you are done. We had to be at Duke in Durham at 8:15 so with traffic to be safe we left Wake Forest around 6:30.  We were happy to find that the directions were pretty straight forward and everything was very clearly marked and easy to find.  I was also very pleasantly surprised to see how quickly I was moved through the system.

When I arrived they checked me off a list and asked me to fill out some paperwork (pretty standard medical history stuff).  I began filling this out and was called up to Admissions to process insurance, verify identity, etc much quicker than expected.  After done with Admissions I sat back down and continued the paperwork.  Was then called back by the nurse to take vitals (still carrying my paperwork with me).  Once done I went back to the waiting room thinking I surely had plenty of time now to complete this paperwork.  To my surprise I was almost immediately called back to a room and a nurse came in to brief me on what to expect and answer any questions I had.

Surgery sure has changed since the last time I had to have it.  I was told to call a hotline number Monday night to find out when to arrive on Tuesday for my surgery.  No food or water after midnight on Monday and I am supposed to use some special antibacterial soap to take a shower both Monday night and Tuesday morning.  I am also not supposed to shave.  On Tuesday I am supposed to go straight to the 3rd floor (very odd to note that every surgery I have ever had has occurred on the 3rd floor regardless of the state or hospital) to register.  Surgery is supposed to begin about an hour and a half after we arrive and is scheduled to last around 3 hours.  We will be taken to a waiting room where the anesthesiologist will come talk to us and give me some margarita in an IV until I pass out.  My wife will be given an Outback Steakhouse pager (their words not mine) so she can wander around the hospital grazing at the cafe or using the wifi until the pager goes off to notify her the surgery is complete. Then she will wander back to the waiting room where the surgeon will meet her to discuss how the surgery went.  I will be taken to the ICU (standard procedure) and she will be able to visit me but not stay overnight.  Then I will be moved to a standard (but private) room where she can stay overnight and I am expected to enjoy the hospital’s accommodations for 3 – 5 days.

After this bit of information another nurse came in to take more vitals, discuss my medical history again, and take me down for some blood work.  It was explained that there was a possibility of a blood transfusion but they try to avoid it and don’t do one unless your platelet counts get very low.  So they do the blood work to see where your platelet counts are at currently to get an idea of what to expect.  Since I have high blood pressure they told me it was also standard procedure to have an EKG.  After the nurse hooked me up and confirmed my heart was beating and I was indeed alive, I was released back into the wild.  It was fortunate that we got there early because the waiting room was jam packed all the way out into the hall when we left but I only ended up spending a little over an hour there.

So here we are, waiting for the day and nervous knowing enough to be dangerous but not enough to really know what to expect.  To be honest my biggest fear is verifying I am doing the right thing by having this surgery.  I must confess that since my symptoms (aside from the back pain) have not been nearly as bad as many other Chiarians on the support groups I sometimes feel like I am an imposter having this surgery (I can’t think of any way to better state what I’m thinking).  But then I remind myself the neurosurgeon said we caught it early and this is more like a preventative car maintenance making sure that the symptoms don’t get any worse and don’t get to the point of doing permanent damage.  I have also been blessed to have many friends and indirect contacts in the medical community who have offered to review my reports and MRIs so I have gotten a consistent consensus from multiple unbiased sources.  That definitely reassures me that I am doing the right thing so now my only nervousness is pain management.  It doesn’t help that the last thing the neurosurgeon told me was “I won’t lie to you, this is probably the easiest / most standard surgery that I perform but also the most painful”.  And of course knowing that everybody’s recovery is different makes me nervous because I really won’t know how my body will react until we actually get there.  But the nurse reassured me that they would make sure I was comfortable and not to worry because it impedes your bodies ability to heal if you are tense or in pain.

So long story short just keeping my mind busy on other things making sure I am as prepared as possible to be down and out for a month and looking forward to a birthday beach getaway this weekend.  Adrianne is doing her best to make sure I have a stress free and relaxing weekend.  She has taken care of every last detail even down to driving to the beach because she knows as much as I love the beach I hate driving because finding public parking stresses me out.  She rented a beach house for us so this won’t be so much an issues but it should be a very fun relaxing time just to be on the beach hearing the waves crash, smelling the salt in the air and feeling the breeze on my skin.  And of course being the foodie that I am it doesn’t hurt any that she has planned dinners each evening of my favorite foods and restaurants (including an evening sitting on the pier over the beach eating seafood and sipping wine).

The fact that I have been so calm so far as the surgery approaches has been very shocking and I am just waiting for the bottom to fall out.  Certainly I have to admit it has affected me; with my personality I have a habit of suppressing unpleasant things and not admitting that they are bothering me.  I know it has affected me because I have been having trouble sleeping (some nights only getting 2 hours) and when I do sleep I have really bizarre off-the-wall dreams.  I also periodically have been known to get very agitated and frustrated over very small things, have mood swings, and just out of the blue feel like crying my eyes out but luckily these periods have only lasted a few minutes and have been pretty few and far between.  While I have amazed myself (and others) at how strong I have been so far, I have a feeling I will be an emotional wreck this weekend but she has taken such precautions to make sure I have a relaxing and stress free time and has been so supportive I’m sure everything will be fine and my worry / focus has been more on trying to make sure all of the loose ends are tied up before the surgery.  (Did I mention my wife is the best wife in the world?)

So here we are less than a week before the surgery and time feels like it is slipping through my fingers with the surgery approaching at a wreckless pace.  I will try to do my best to make updates on here both for myself and potentially others but we shall see … more to come

so amazingly thankful for every friday night.  will had to work a little late, so i called him and had him meet me for dinner.  it was good to get out of the house and wind down the work week.  we planned to get up a tad early on saturday so we could head down town to wake forest’s herb festival before striking out to cary for the great grapes wine event.  we found a lot of great things to add to our garden and can’t wait to see all of our plants in full bloom this summer. 

the wine festival was a great relaxing time.  we sampled tons of different wines from many different vineyards and by the end of the day had classified ourselves as wine snobs.  regardless, we still had a great time sipping a bottle by the pond and enjoying our picnic basket.  the sun was out and there was live music, what more could you want? 

sunday was relaxing.  after church we planted our new peonies and got the grass cut.  will caught us up on laundry, since i am the new master of the john deere.  amelia decided she’d play along for some photos while we watched the sunset on another perfect weekend.  this time next week – we’ll be watching the sunset on the ocean!