willandadri.com

you don’t know what you have until it’s gone.

lori left yesterday.  she’d been scurrying around for weeks to keep up with dishes, laundry, errands, doggies, pills, tears, and anything else you can think of.  we sent her home so she could be back in time for chris’ birthday and a trip to london to spend some time with her girl friends.  however, just when she left my body seemed to get overwhelmed and worn down.  i’ve come down with some stomach upset and a possible ear infection and we slept right through two sets of husband’s meds this morning after the power went out last night and killed our alarm clock regimen.

i should be strong enough to handle all of this on my own.  i really should be.  maybe its the lack of rest (although we slept about 14 hours last night), just the reality of dealing with it all, or the feeling of being alone when you know you should be strong.  i just wish i could do more to comfort will and make his pain lessen, but i can’t.  the frustration of that compounded with my own issues are making my glasses get speckled with salty tears.

he is sleeping now.  thankfully the new arsenal of medications compiled with arnica overload has him pretty good, so long as we stay on top of things.  there’s just lots of sleeping and resting to be done.  if i felt better i’d head to whole foods and load our house up with some wholesome food for the week, and stock up on some new arnica pills – but its a jaunt down capital and i don’t want to leave him alone for such a long stretch.  we need a delivery service in wake forest.  that could make things so much easier.  oh well, what can you do?

mom and dad surprised us with a 20 hour visit and were kind enough to take lori back to the airport for us.  when we got back from the er on friday night they rang the doorbell with will’s favorite dinner of manicotti and ceasar salads for everyone.  luckily will felt well enough for a little while to sit up and enjoy his dinner before heading back to bed for more quiet/dark time to sleep his headaches off.  the rest of us played scrabble (or tried to anyways – appears that some of us like to bend the rules too much) to keep our minds off things.  after scrabble we headed to bed.  saturday morning we got up in a scramble and will said he was well enough to go have some breakfast so we all got some waffles before lori, mom, and dad all had to scramble back out of town.  like the wind – they were gone.

will and i rested for the rest of the day until 7pm we decided we’d grab some hamburgers and eat them on a swing in a local park.  we got about half way through our burgers when i got an immediate onset version of the roto virus and we had to scamper back home as quickly as possible (luckily this was temporary and seems to be gone today).  we called it a night and slept right through the power outages of the night and have been lumps of coal again today.  i’m hoping we can shake this funk.

OK … either it took 2 hours for my Percocet to kick in or the Homeopathic remedy that my wife and mother-in-law swear by works even better.  I apparently dozed off after taking 7 of these Homeopathic pills thinking that nothing would help my headache.  I woke up and got up and went to use the bathroom and when I returned and got back in bed I waited for the usual pounding to begin … nothing.  I can tell that it could come back at any moment if I overdo it so I am just happy and content to sit in the bed with the laptop as I have been doing each day feeling much much much better.  What a relief!

Arnica Phosphorus 30 c made by BOIRON for Dizziness with Headache … just do it!

So we just got back from the Duke Raleigh ER.  After sinking four hours doing blood work and CT scans all we know is everything looks normal.  The CT scan shows a fluid “pocket” or buildup around where the surgery was done.  We were informed the headache was probably due to the pressure buildup from the fluid.  To give you an idea of how bad this headache is, they gave me 5 (not sure if the dose is mg or not) of Morphine.  I only got 4 when I was in the hospital post-op and that worked fine.  Well even this extra jolt of pain meds only dulled the headache and didn’t make it completely go away.  It probably took me from a 6 to a 3 on the pain scale.  Then within 2 hours I was back to the full on headache even worse than when I first arrived.  I mean when it is at its worst I can look in the mirror and see my temples moving each time my head pounds.  And when it stops pounding it was so bad that my temples and forehead are very sore and tender to the touch.  And because I have all of this luck and happen to not tolerate percoset well and get violently ill when taking dilotid he pretty much told me there was nothing they could do.  All of the medicines that do work for me they won’t let you take outside of the hospital.

I suppose it is positive to know that the fluid buildup is pretty common and there is nothing seriously wrong.  Another positive is that he was able to talk to Dr. Zomorodi’s partner and he guaranteed me that Dr. Zomorodi would be up-to-date when he returned on Monday and would definitely want me to follow up next week and could probably get me in Monday.  So the frustration now sets in.  I have just taken my first dose of the new prescription of percoset which is double the amount that I was taking.  This isn’t even putting a dent in the headache.  So I can just imagine laying here trying to be as still as possible and not focus on the headache until Monday.  Not cool, with my ADHD laying still for so long drives me crazy so it boils down to a choice between having a dull headache and focusing on laying still without getting too frustrated, or giving in and moving as much as I want but having an intolerable pounding headache.

Probably the most frustrating thing is just that I am just now learning what people mentioned about how there isn’t really any consistent after-care for this surgery.  We were just commenting today that our parents were more informed about what they were getting into for having their knee replacement surgery than I was for having a “brain” surgery essentially.  And it doesn’t exactly make you feel the best when you get setup in the ER and the nurse asks you if you have had any surgery and you explain the surgery you had and mention Chiari Malformation and get this blank stare with a “what is that? I have never heard of that before.”  I suppose I should have expected this because I had certainly never heard of it until I was diagnosed but then you are kind of like why am I even here? How are you going to treat me if you don’t even understand what is wrong or what I had done?

And of course, Murphy’s law both my primary doctor and Dr. Zomorodi’s PA finally returned our calls about 10 minutes after we decided they weren’t calling back and headed out the door to the ER.  So I’m not sure if I will be back on here until sometime next week depending on how bad the headache is.  I have noticed that when it calms down even just sitting up for more than 5 minutes will make it come back in full force.  Hopefully things will calm down soon.

So today I am starting to freak out.  Starting a couple of days ago I began having crippling headaches.  My head would just pound like somebody was inside my forehead doing some construction.  Watching in the mirror I could see my temples throbbing in temp with my pulse. When I lay down and don’t move it generally feels better but my temples and forehead are sore from the headache and as soon as I sit up or stand up and move around my head starts pounding again.  Adrianne called the neurosurgeon on call last night to discuss what was going on and they mentioned the same thing that Dr. Zomorodi did when I was still in the hospital and had very bad headaches.  Best case scenario is I have Chemical Menengitis which is when the surgical fluid mixes with the spinal fluid during surgery.  This is supposedly easy to treat with steroids but they prefer not to unless it becomes unbearable because the steroids slow the healing process.  They also said they could do a CTScan to rule out internal bleeding which she didn’t think it is.  That is the part that is freaking me out a bit because I woke up this morning and looked at my pillow and there are several small blood spots (which has never happened before).  We are trying to go in to get checked out today because I also have nausea, claminess / sweating, and random muscle spasms.  Last night was a doozie of a muscle spasm … every single muscle in my body spasmed at once.  It probably would have been very amusing to watch as my arms and legs flailed in all different directions while my back arched and neck and head jerked backwards.  What a fun time!  So Adrianne called mainly because she was concerned because all of those symptoms can also be attributed to an allergic reaction to Oxycodone (the narcotic in Percocet). Sooooo … trying to take it easy for now until we can figure out exactly what is going on.

Big D sent us some amazing cupcakes to brighten our spirits this week. Lori picked them up and we all got to sample some delicious treats! We’ve rotated through the box all week, trying a new kind each night. Yummay!

The scarring is healing nicely and the bump fluxuates in size depending on the time of day and day of the week. Arnica Montana seems to keep the swelling a little less severe, but still does not get rid of the bumpage all together.

Wednesday we tried to get hubbs out of the house for some lunch. He’d been feeling really good and we thought we were up to some greatness when we got out of the car and found a head’s up penny in the parking lot. However, too much heat, sun, or allergens in the air made for a rough evening on Wednesday and a tough day today.

Last night Lori and I tried to lighten the mode with a GUACAMOLE THROWDOWN (Bobby Flay style) in honor of Cinco de Mayo. We gathered up our ingredients and began to chop, blend, and spice our way to some yummy looking guacamoles. We called husband in and asked him – ARE YOU READY FOR A THROWDOWN? He replied that he was, but it was a little lackluster. It was all he could muster. However, when he got to the table and saw what we had to offer he warmed up a bit. He played along and sampled each guacamole and posed for the camera. He gave us commentary on each guacamole and what he liked about each one and then selected “A” as the winner! It was Lori’s batch! We all enjoyed the Cinco de Mayo treat and called it an early night.

Sleep, sleep, sleep, and more sleep is all we’ve seen husband do since the sun came up this morning. He’s got me worried since he is not a big nap taker, and since he has not really slept any extra since the surgery occurred. I go into the bedroom every hour just to make sure he is still sleeping and check on him. He’s sawing logs.
When he got up this morning he said he felt disoriented, headachy, and a bit dizzy. Lori got him more caffeine in the form of a vanilla latte, and went to Whole Foods for more Arnica pills. He sat up in the bed for about an hour and was then sleeping again. Now he has a pillow over his head and the curtains drawn.

Migraine? Too much oxycodone? Side effects of the oxy can be headache and dizziness. I decided let’s remove the oxy from the equation for the rest of the day and just give him acetaminophen when it’s time for that pill batch. Let’s see if that helps any.

Helpless. Just makes you feel so helpless when someone you love is in pain and there is nothing you can do to assist. I’d do anything to make his pain stop and have him back to his happy old self. Hopefully we can get him feeling better here soon.

Finally, 4pm he woke! He seems to feel better than he has in a few days. Hopefully we’re on to something here!

OK so I know I have a bunch of back posting to do.  I have been keeping notes but just haven’t gotten around to updating the blog yet.  I just had to post a few things on my mind before I forget them.

We started getting a bit worried yesterday because there were some bumps and redness appearing on my neck.  The swelling also had been fluctuating (better in the morning, worse in the evening) in past days but seems to have leveled off and been pretty constant recently.  That and the fact that I randomly feel hot, sweaty, clammy, and nauseous had us worried enough to make an appointment to talk to our regular doctor today.  Luckily each time I felt bad we took my temperature and confirmed that I did not have a fever.

Adrianne tried to call the neruosurgeons office with no luck.  It was then I recalled that in my well thought out plan of getting the surgery done sooner rather than later, the bad side effect was that the neurosurgeon was now out of state at some major neurosurgery conference for this week and would not be available to answer questions.  So we scheduled an appointment last night to see our primary care doctor today.

As an aside, one of the things I really like about this doctor is the abillity to manage your appointments fully through their secure portal.  I was able to log on at 11:30pm and select which doctor in the practice I wanted to see, and then select my preferred appointment time out of the date / time combinations returned.  You can even do advanced registration online and submit the copayment.  So when I got to the doctor’s office rather than waiting through the 5 minute customary barrage of questions and request for co-pay, she simply said I see you have comlpeted advanced registration and paid.  Then she handed me my appointment sheet with labels and told me to sit down that a nurse would call me back shortly.  Much much more convenient!

So we get called back and remember right away that she has access to all of the hospital records since she is in the same network.  I was reminded of this fact when she went over the medications I was taking and asked if I was still taking medicines that had been prescribed to me at the hospital.  So to help you realize exactly how hilarious this next part is, I have to give you some brief background. While in the hospital I became suddenly and violently fixated with lime sherbet. Orange was offered in its place but no other would do, it had to be lime. The nurses in the ICU were amazingly accommodating searching all over the hospital for hidden stashes and bringing me lime sherbet at any time of day or night when requested.  Once I went to a regular room they were not so accommodating and usually told me they were out (ironically enough the ICU nurses said that they had a stash and it was this stash the ICU nurses were raiding).  They offered me Orange sherbet a few times but I just turned up my nose because nothing but lime would do! The soon understood and stopped offering simply stating that they did not see any lime sherbet. So apparently the hospital staff was very amused by this and made some remark in my paperwork because as my primary doctor was reviewing the hospital report she looked up smiling at me and said “so you like lime sherbet huh?”

Okay so maybe it was only amusing to me but I found it delightful that my legacy at Duke hospital was sending nurses on numerous goose chases looking for the elusive lime sherbet.

So back to what many are probably curious about … primary doctor took a look and said that everything looked really good to her.  She asked if I had ever had an allergic reaction to stitches (which I have not). Her basic assessment was redness is pretty normal and as long as there is no puss or bloody draining accompanied with a high fever than I am fine.  She said that most likely the bumps and/or redness were from a reaction to the tape that was used to hold the dressing in place or skin irritation that can commonly happen when stitches have been in for a while.  She was also very impressed at how quickly I was recovering.  She made remarks several times about how well I seemed to be doing, and how much mobility I already had with my neck.  She also reassured us that when she looked at the stitches they were very well done.  She commented several times that the stitches were very nicely done and that the area was fully sealed and looked very nice.  She answered several of our questions since we got different stories from nurses and doctors at Duke.  For example, a nurse told me she had orders to change my dressing every day and that I was supposed to keep the dressing on each day with antibiotic cream.  The doctor so absolutely not that it needed to breathe and exposure to the air would be good.  He further said that putting the antibiotic cream on could do more damage than good because it could trap dirt particles that otherwise would not be there and may actually cause infection.  So the consensus when we left was to only put the cream and dressing on if it started to look like it was getting infected.  But of course having seen doctors and nurses pretty evenly split on their advice we were still confused.  Our primary doctor confirmed that it would be a good idea to leave the dressing off and not put on the cream.  She said if the wound wasn’t completely sealed or there was any drainage I should probably use the dressing and cream but as it is since it looked to be healing very well and sealed to just keep doing what I was doing.

So all in all a very good day today.  Each day continues to have it’s highs and lows but today just seemed a generally good day. Not only did we get answers that we were looking for with the reasoning and explanations behind the answers, we were also reassured that we had nothing to worry about and I was healing even faster and better than anticipated.  And the best part is I didn’t have any real emotional lows today.  I felt pretty positive and encouraged all day.  I have also noticed that my emotional lows seem to correspond with late evening when the sun is on its way down or it is already dark.  And today even though the sun is on its way out I still feel pretty darn good!

It seems almost surreal that one week ago we were sitting on the beach listening to the waves crash, and today we are watching husband quickly recover from his posterior fossa decompression surgery.  So much has transpired over the past 7 days it is really hard to fathom everything that we’ve been through.  Sometimes I still find myself overwhelmed by God’s grace that got us through all of this.  We were so worried, so nervous, so scared, yet Will has come through everything with strength and dignity about it all.  Sure, he gets a little depressed and irritated with being laid up sometimes, but he comes through it within minutes and is back to himself.  He’s on high dosages of medications that he takes around the clock.  Lori and I are here to remind and administer the medications just about every two hours.  While I am working, Lori is on the day time shift, and then I take the night time route.  I set the alarm clock every two hours while we “sleep” to remind us to get up and take his next dose.  No complaints from the patient thus far.

We were given many gifts to get us through these trying times.  Lori handmade me a necklace with special stones that aid in healing and processing of trying times, she also made herself and Will some Chiari/Syringomyelia awareness bracelets/necklaces that have tiny amethyst stones and tiny skulls on them with purple and turquoise ribbons.  Mom sent me a silk scarf bordered in bright yellow to remind me of the strength of the mustard seed.  The numbers of cards, flowers, balloons, gifts, and neighbors dropping by with food is something I still find hard to process.  I know Will really can’t fully grasp it all himself.  However, we feel the love from our large circle of supporters and thank you all for everything you’ve done and continue to do.

Each day gets easier, and the gravity of the entire situation seems to begin to lift.  We just cannot reiterate how thankful we are that the condition was caught so early on, and that Will has not endured any permanent damage.   So many others with these conditions are not so lucky, and we just hope that Will’s story will raise awareness for someone with these symptoms to get them checked out so they can be saved from the horribly crippling pain that these conditions can cause.

So I haven’t had a chance to post very much because I just got home from the hospital yesterday after completing surgery.  I decided rather than post one long massive posting with everything I can think of I will try to make it a little more organized and make multiple smaller postings by topics.  That way I can work with my ADHD and stick to topical discussions rather than let my mind wander and get sidetracked forgetting important notes I wanted to record.  More to come shortly …

surgery went amazingly, perfectly, remarkably well.  dr. zomorodi came out to give us the good news just about 2.5 hours after the surgery initially began.  we were elated to hear that everything went according to plan and that it was already confirmed that will’s spinal fluid was once again freely flowing.  they let us know that will was moved to the icu and shuffled us from the 3rd floor waiting area to the 4th floor waiting area.  we’d had an outback steakhouse style pager throughout the entire process that alerted us when he was ready for visiting pre-op, when he was given his second round of anesthesia, when the surgery began, when the sutures were being put in, and when the surgery was over.  we carried this little pager with us up to the 4th floor and waited for some buzzing action to go see our surgery survivor.  after about an hour of us being impatient i checked with the nurse who told me will was ready for two visitors.  lori and i gathered up all of our worldly possessions (including and not limited to a rather large bag that weighed about 400 pounds) and made our way back to the icu. 

we found will laying peacefully in the bed in the icu, looking as great as usual and were surprised how wonderful he appeared.  he seemed to be dealing well with the medications, morphine pain pump, and other drugs the attending nurses were supplying him with.  he rested well and immediately fell in love with some lime sherbet.  the nurse made sure he had an endless supply and i stayed with him until they kicked me out for the night.

the following morning i showed back up at 8:30am as soon as visiting hours began and found will sitting straight up in the bed munching on some breakfast.  i thought he was doing pretty good to be eating scrambled eggs, but it was not until about 30 minutes later that i found out he had already scarfed down some bacon and home fries!  that boy was hoongry!  he did well throughout the morning and they got him up and walking a lap around the icu before they determined he was ready to move to a regular room around 1pm.  they asked if he would like to be driven in his bed, or walk over to the new room and he decided he was good enough to walk, so off they went.  lori and i tagged along behind him lugging our 400lb bag and everything else we’d seemed to accumulate over the past 24 hours. 

we arrived to will’s new room – 4130 on the same floor as the icu, just around a different wing.  we got will settled in and tried to get him comfortable.  he seemed to be doing okay for a while, but then his morphene began to wear off and the pain began to escalate.  a group of 1st year med students dropped by to ask some questions and learn about patient-doctor relationships, and we allowed them to sit and chat for about half an hour.  after this visit will really felt his condition was declining even further and we then had to try and seek some additional attention from our nurse.  unfortunately the pain combo they first attempted was not putting a dent in the pain and the pain had risen from a 3/10 to a 9/10.  will felt frustrated and irritated in the lack of time of the response and the pain he was feeling.  luckily a new nurse came on board around 7:30pm and sat and listened to our frustration and got will on a new pain combo.  his new medicines are working much better to curb the pain and he is now settled at a 3 – 4 out of 10 for the most part.

he’s been up walking two laps today and has gone up and down three stairs to prepare him for getting into the house.  the nurse removed the original gauze bandage and replaced it with a new bandage.  will’s scar is sutured with nylon stitches and looks perfectly healthy.  the incision measures about 5 inches in length and extends about 1 inch past his hair line. 

we’re staying on top of his pain meds and keeping him perky with piles of delicious treats from the cafeteria and around the durham area.  he’s received 4 flower arrangements and two balloon bouquets that brighten up his room and help him keep focus on the healing process.  he attempts his neck exercises and works on them as much as he can while his pain meds are in full effect.  so far so good.

he’s been a trooper, cracked some jokes, and looks like a precious doll resting in his bed.  so proud of all he’s done, the pain he is dealing with, and the grace in which he has handled it all.