willandadri.com

I hope I am not speaking prematurely but today seems to be a great day.  I was treated to a nice seafood dinner at Shuckers last night for which I am very appreciate. Who can resist a nice pile of fried oysters, fried clam strips, fried okra, and coleslaw with a nice cold coke? We then ate some strawberry shortcake when we got home with the cake and fresh stawberries that were provided to use yesterday.

So I woke up this morning fearful that the headache would return since I had changed medicines.  It was very difficult to wake up but up until this point I still have had no headache, vision troubles, dizziness, or nausea today.  I did start to feel a little warm about an hour ago but put the fan on and felt better within 5 minutes.  I am still going to take it easy and not overdo it to make sure I continue to feel good.  Adri also told me earlier today that the incision looks much better even only 15 hours after the stitches were removed.

She has gone to lunch with a coworker and it sounds as if I will benefit.  She is going to bring me back my favorite dish from Macaroni Grill (Penne Rustica) when she returns.

Another miracle happened today.  The neurosurgeon’s PA called me! Imagine that, I didn’t even have to call and pester them.  Things are starting to look up!  It was lucky they called me also because Adri had talked to someone this morning and they told her that they couldn’t call the new prescription into the pharmacy and so they were going to fed-ex it overnight.  I was worried at this point because this is the same thing I was told about my medicines early this weekend and they never did the fed-ex. So luckily he called and I had the opportunity to ask what the name of the new medicine is.  The medicine I mentioned yesterday that has the caffeine with a low dose of narcotic is Fioricet.  I don’t even remember the original reason for his call but when I mentioned my wife had spoken with somebody this morning and that they were going to fed-ex the medicine because they couldn’t call it in he began checking my file and after a minute said I don’t see a note about that.  He said it is difficult with this medicine because it does have a narcotic in it but the dose is low.  So he got the Target pharmacy number from me to check if he was allowed to call it in.  He called me back about 10 minutes later and said he was able to call the medicine in but he wasn’t sure how long it would be before it was filled because they were all at lunch.  As long as I can pick it up today I don’t care how long a lunch break they want to take!

So today was another lesson in how a doctor’s support staff can cause the practice to sink or swim.  I have had an “interesting” relationship with Dr. Zomorodi’s assistant.  She has never answered the telephone when I call, has never once returned one of my calls (even though she says on her voicemail she will return my call within 48 business hours), and has always had an excuse when I do reach her for why she hasn’t done what she said she would do.

My wife contacted her yesterday to inform here I would run out of my pain medicine this morning at 10:00 am and she informed us that she could not electrically send the prescription since it was a controlled substance but the she would overnight fed-ex the prescriptions to us so they would be there in the morning to prevent us from having to miss a does.  OK sounds great.

So we wake up this morning and keep checking but by noon and still no sign of the fed-ex we start to panic. Thus begins the series of frantic phone games.  We called Dr. Zomorodi’s assistant several times and a miracle occurred … she answered.  She assured my wife that she would call in 2 prescriptions to the Target pharmacy close to our house.  She said to give her and hour and even confirmed the time she would be sending it.  So at 4:00 pm we call Target to ask if I had any prescriptions called in.  Shockingly enough the answer was NO.  So we start calling back Dr. Zomorodi’s assistant knowing that her office will close in 30 minutes and guess what?  Another shocking response … she didn’t answer. As a backup plan we call my PCP because she offered earlier to be a go-between because supposedly she has a higher success rate of calling the office and getting through to somebody.  Finally at 4:28 our PCP calls and tells us that she has a prescription waiting for us at the front desk.  We scramble over to see her and pick up the prescription thinking she would close soon.  After picking up the prescription we realized she had prescribed just enough to make it to my appointment with the neurosurgeon tomorrow.  Just for kicks we checked if our prescription had been faxed in when we dropped off the prescription from the PCP.  Nothing, nada, no dice.

So we waited the twenty minutes, picked up the prescription, and got some water so I could take my dose on the way home.  Back in business!

so we’ve determined –

the size of the bump is directly proportional to the size of the headache.  will’s fluid filled “bump” on the back of his head was monitored by ct last friday and it was determined that it was just a fluid filled pocket, and nothing to be alarmed about – that it would just go away on its own.

however, it grows and shrinks just according to how it feels every day of the week and every hour of the day.  however, the one thing we are sure of is that the size of the bump correlates to the intensity of the headaches that will suffers from.  unfortunately we do not have the magical morphine at home to help keep these headaches at bay.

fortunately tonight we did know that we needed to attack this thing with pulled curtains, silence, extra flexeril, extra arnica phosphorus, arnica montana, coca-cola, a lavender scented candle, and lots of love.  luckily i think we knocked it out of the park.  hopefully it will stay that way.

large thanks go out to will’s cousin lisa white for our scrumptious dinner this evening.  lisa stopped by tonight with a tasty chicken cheesy casserole, tortilla chips, and red white and blue cookies.  thanks to her for keeping me away from the kitchen, out of the dishes, and husband’s belly full of goodness!  hugs to lisa!  we owe you big!

we found out this morning that we have a follow-up appointment on wednesday at dr. zomorodi’s office at 1pm.  they are going to evaluate the incision, see if stitches can come out, discuss the scarring, and the BUMP!  hopefully we can get will some better pain management, and some answers to the things that have been plaguing us recently.  get this bad boy under control!

apparently i was such a sad sack yesterday i’ve convinced my poor momma to come to town for a few days to help me get things under control.  she’s such a sweet little thing to come and help me, i just feel bad that i am 32 years old and still need her to come bail me out.  however, either way i can’t wait for her to get here.  sometimes when you have all of this pressure on you, you just like to be a little kid, if even just for a moment.

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.