Hospital & Surgery Details For Family & Friends...

Many have asked so I thought it might be helpful to just post it on here - the WHO, WHAT, WHEN, WHERE & WHY of it all...

WHO:  Me - mother to Matthew and Katie, wife to Chad, daughter to Don & Carole, sister to Denise & Donny (with whom I pray for a reconnection, an email, anything - if you're reading this, know that I love you both tremendously), friend, aunt to 7 nieces and nephews and more...

WHAT:  Spine surgery #7: (1) Repair CSF leak, (2) Exploration of spinal fusion

WHEN:  Tuesday, July 23rd, 2013 (arrive at hospital 6am, surgery starts 8am)

WHERE:  Cooper University Hospital - 1 Cooper Plaza, Camden NJ - 08103

WHY:  This is a tricky one but I'll try to summarize simply and concisely. I have a cerebrospinal fluid leak (CSF) which stems from the leak discovered in my most recent spinal reconstruction last November 2012. At that point, it was 'plugged' with the screw at T12 (the vertebra I fractured at 6 wks post-op in March 2012) in a washout surgery just 4 days after the larger one in November where they extended my fusion up to T2 and down to S1 into my pelvis (w/ pelvic anchors). In Feb 2013, I began experiencing severe, debilitating headaches - I tried everything (sinus surgery, new glasses) to try and eliminate the headaches but nothing worked. We moved from NJ to PA at the end of April and 4 weeks later I was in the ER, admitted with severe headaches after a brain MRI showed a significant CSF leak. I spent a week in the hospital and then spent the next 6 weeks seeking out 2nd, 3rd, 4th opinions. And they all said the same thing: surgery to fix the leak. I am not a candidate for the lesser and much less invasive "blood patch" due to the sheer volume of bone graft and fusion bone not to mention hardware in my spine.

DETAILS of SURGERY:  They will explore the fusion in both the thoracic and lumbar areas in hopes of locating and fixing the CSF leak. There is no guarantee that they'll even be able to locate it despite having evidence that one most likely exists at the level of T12 where the previous leak was. They have no idea about the length of surgery (stating "it could take 4 hours or 14, we simply have no way of knowing until we get in there and see what we're up against"), length of stay in the hospital, length of recovery or even what to expect pain-wise post-operatively. I was in the ICU for an unusually long time last surgery, 3 days. Typically one spends about 24 hrs in there and then moves to a regular room. Since nothing is "typical" or "regular" with me, the hospital has already prepared for the atypical, unusual surprises that most likely will come their way regarding my post-op care and recovery.

My Dad accompanied me this afternoon as we went to Cooper University Hospital to meet with the ICU Nursing and Management team. We met with the Clinical Director (MaryJo Cimino, one of Cooper's finest - she is the most wonderful, knowledgeable and experienced critical care nurses I have ever had the pleasure of meeting or knowing), the Assistant Clinical Director (Suzanne Gould, another one of Cooper's finest nurses), Maresa Class (Patient Representative and advocate for any and everything patient-related). We had a good discussion and they all helped to put some of my fears at ease...they can't guarantee anything, but they can guarantee that all the ICU and Neuro nurses who work with me will be fully informed and kept up-to-date on my medical issues and circumstances. That's all I can ask for. I know I will be in very competent, skilled hands with MaryJo and her team as well as my amazing and highly skilled neurosurgeon, Dr. Steven Yocom and orthopedic surgeon, Dr. David Clements. 

4 Days Til Surgery #7, on July 23, 2013

With just 4 days looming, my thoughts are very conscientiously being rerouted from ones of fear and "what if" to those which envelope optimism, positive thoughts and ONLY positive outcomes. It's all I can do to carry on a conversation without excusing myself to use the restroom (again, sorry TMI) but my nerves always do and always have gotten the best of me. I've always had the so-called "nervous stomach," every since I was in early elementary school. A family of worriers are we...lol...we put on a good 'game face,' but underneath it all, we're all pretty terrified each and every time I hear my orthopedic or neurosurgeon say "I'm sorry but you need surgery to fix this." From past experience, which is all we have to draw upon, my 'luck' hasn't been the best...but despite the numerous set backs and issues that arose during my last surgery in November 2012, I'm still here...still kickin...still putting one foot in front of the other...that's all I really CAN do...sometimes it's not one day at a time, more likely it's one hour and in really bad times, it's one minute at a time...

I've revisited this thought before but I find it necessary for myself to revisit it again...we all have our 'journey' in life. Some of our journeys are filled with laughter, excitement, happiness and smiles. Other journeys in our life take us down some scary and unfamiliar paths, and those paths stir up in us a sense of fear, sadness, trepidation and tears. It really isn't a matter of "being dealt a bad hand" in life or of not having good luck in life. It has nothing to do with those things. It has everything to do with your state of mind and how you choose to handle these journeys life throws at us - - and it is a choice. You can choose to be a prisoner of your journey or path and say "Oh poor me, look at all the difficult things I've had to overcome in my life." OR you can choose to DO something and MAKE something of your journey in life and say "Ok, here we go again...we did it last time, we will get through it again. Let's just hang on tight and do our best to come out on top." I often joke and say "Man, I must've been a prostitute or murderer in a past life - what did I do in my previous life to make God so mad at me that he'd 'make me' go through all these surgeries??" We get a good laugh out of it because we know it has nothing to do with 'past lives' or making God mad. It just IS - plain and simple. I have a choice every single day - to either give up or fight. I can't give up because, uh, well I have a 4 and 6 yr old who are counting on me and quite frankly, giving up isn't an option - it's just not in my DNA to 'give up.' So that leaves the only other option, which is to fight. Fight once again through this next obstacle, this hurdle we need to jump over in order to make it to the finish line. I know there is some profound "lesson" that I'm undoubtedly supposed to "learn" from all of these obstacles in my life, these journeys and paths that have been anything but straight and narrow. I feel like I've been paddling upstream with a teaspoon my whole life when it comes to scoliosis but what can ya do but just get through it? It's difficult, yes - it's painful, yes - it's gotten me down mentally, yes and it has tried my strength mentally, physically, emotionally and spiritually - yes, yes, yes and yes. But I must make one point perfectly clear: Crying in your cereal and whining about it doesn't change the reality of your situation so just do your best to get it together, focus and don't give up - never, ever give up.

So what's funny about this (and all that I write) is that I'm not saying it to be 'preachy' or anything. I'm almost in a way trying to re-instill what I'm writing into my own beliefs again, so I don't forget what it is i'm trying to remember to believe in! LOL! It's easy to forget and loose focus and so when I write and get it all out on "paper" so to speak, I am reminding myself of what it is that I don't want to forget. 

So with that - and with just 4 days left until surgery, I am trying not to loose focus on what is important and what it is that we hope to accomplish with this next (and God-willing LAST surgery)...my children first and foremost, are the most important two little people in my life. They are so little and so courageous. They know Mommy is going to the hospital because she needs her boo-boo's fixed again, but they also know that through all of the unknowns inherent within this next surgery, what IS constant and what IS known is that they are loved, secure and will always have people who love them and have their best interests at heart in their lives. My husband, my strong and supportive husband, who has been through as much as I have over the years with all of this, is my rock - he is always there for me in whatever capacity I may need him and for that I am eternally grateful. And then of course, there are my parents, who have literally given up months on end for me and my family, dropping everything often times with little or no warning, so that they could come up and be with us helping us out with everything and anything imaginable. Without their help and support, my family and I would literally NOT be able to get through everything we've gotten through. True angels here on earth.

"FEAR NOT, FOR I AM WITH YOU; BE NOT DISMAYED, FOR I AM YOUR GOD; I WILL STRENGTHEN YOU, I WILL HELP YOU, I WILL UPHOLD YOU WITH MY RIGHTEOUS RIGHT HAND." — Isaiah 41:10

SURGERY #7: 

Tuesday, July 23rd, 2013 ~ Cooper University Hospital

As I face yet another surgery, this one will be #7, I pray the Lord will guide the hands of my neurosurgeon as he works to find the exact location of my cerebrospinal fluid (CSF) leak. HE is the one in control. HE is the one steering this ship and I trust in HIM that all will turn out well and with the best possible outcome possible.

I go for my pre-admission testing tomorrow at the hospital. It's strange. It almost doesn't feel "real." IDK. It's hard to explain but it just doesn't feel real, like it's really going to happen in just one week. I hardly had any time to digest the information let alone schedule. The hospital called me last Tuesday and said surgery would be in less than 2 weeks because the surgeons didn't want to wait any longer. So whammo, there ya have it. Surgery in record time, which is great b/c I don't have to wait months and months like I did last time. But on the other hand it feels like it's happening so so fast that I don't have time to really digest it. I just know it needs to happen b/c living like this with this amount of pain is just not an option. I pray pray pray that this surgery, with all of the unknowns and all of the uncertainties that lies ahead, is the right decision. I hope that the Lord guides these surgeons hands and leads them to the problem area and that He guides them to FIX it. I have 8 days until surgery #7.....eight days....

Here We Go Again...

Do you ever wonder, "When will it end? When will my life be 'normal'? Was it EVER 'normal' or is this it?" Well, if you have - you're not alone! I am 7 months post-op from my most recent surgery in late November, where Dr. Clements performed a washout surgery, repairing a tear in the dura (the delicate sheath protecting the spinal cord). A tear is rather common in any kind of lumbar surgery and given the extensive nature of what I had done last year, a tear is no less surprising than was the pain following the surgery.

So, the last 6 months has been full of exciting and not-so-exciting things. In January we listed out house (on a Thursday to be exact) and by Monday we had 9 offers and sold our house in record time! No one EVER expected that. A true blessing for sure. We moved to PA, to a small town in the county full of rolling hills, farms and farmers markets! The kids couldn't be happier - they've adjusted far better than I ever could have imagined. My husbands' 90-minute commute home is now just 25 minutes and we're knee-deep in making this house our home. New paint (top to bottom), new flower beds and even a fenced-off garden in the back of the yard. It's lovely, really. A covered front porch with flowers and a swing and a paver patio great for entertaining and BBQ'ing. Heck, it even has a fire pit set with paver stones and gravel. Everything is falling into place nicely.

UNTIL...a point in early May when the headaches I've been having for 6+ months got so bad that I went to see an ENT (convinced it was another sinus infection), who then referred me to a neurologist the next day, who THEN sent me straight to the ER with a suspected low-pressure, low CSF headache. I was admitted right from the ER, spent 3 days in a local community hospital, and then was transferred to Thomas Jefferson University Hospital under the service of their headache specialist and neurologist. He too, was convinced that my headaches stemmed from low CSF pressure and that the only way to fix it was via a 'blood patch' which with all my fusion and bone would not be accessible or surgery to repair the leak. The headaches build as the morning and day goes on...and when they're really bad, I feel really nauseous. They're headaches that respond to nothing, medication-wise, as far as relief goes. With these kinds of headaches, this IS no relief except to lay back down and pray that I'll fall back to sleep.

I saw 3 specialists and consulted with two over the phone, the overwhelming majority was undeniable. My orthopedic surgeon had me see his neurosurgeon specialist last week and he was convinced that I needed surgery to repair what he suspected and was 75%+ sure of was a CSF leak. After speaking with my orthopedic surgeon this AM, he told me that if I were to have the surgery, it needs to be now, sooner than later. He said that although he's done thousands of spine and scoliosis surgeries, he has never done THIS kind of surgery, where he has no idea of how long the surgery will take and has no idea how long I'll be in the hospital because he has no idea how things will go once he's in there. Having never come up against a "case like this" with a patient presenting with atypical low-pressure headache symptoms, he's just not sure what he's going to come up against once' he's in there. For once, just once, I wish something about me was 'typical' or 'commonplace.' Unfortunately though, nothing about me or my scoliosis is 'typical' aside from the curves.

I need time to think...pray...reflect...on what I am about to potentially have to face...again...with time come clarity - and hopefully peace. I just want desperately to live a boring life, enjoying my family and children...and not having to worry about when my "other shoe" will drop. So for now, I pray...

11 Weeks Post-Op and Doing Great

It has been a looooooong time since I posted - and for that, my apologies!  It has been a whirlwind of a time.  Having had not one but two surgeries (11/15/2012 and then an infection made for a second surgery 4 hours in length on 11/20/2012).  I spent a month in the hospital, several days in the the critical care unit, then another few days in ICU and then finally into a regular room.  A 4-day stay at Magee Rehab was short-lived because I developed something called "Drug Fever" in which I was literally growing sicker and sicker with each passing day because I was allergic to the medicine I was on for the post-op infection, but it took them 2 weeks to figure that out.  I had fevers of well over 104 degrees, drenching sweats followed by bone-chilling shakes and chills - that went on 2-3 times a day and lasted 2 weeks before the specialists at the hospital even had an clue what was wrong.  They ran so many blood cultures that I became dangerously anemic, losing 1/2 my blood volume from both post-op bleeding and post-op infection and blood tests.  I developed bilateral pleural effusions, and needed to have the fluid drained in my lungs and surrounding space with needles. That sucked...alot...I don't ever remember being more afraid of dying in my entire life, ever actually. I remember quite vividly nearing my 2nd post-op week in the hospital (almost 4 weeks in the hospital at that point) and pleading my Mom, "You have to get me out of here...tomorrow...if they don't figure out what's wrong with me I'm going to die...and I can't...die..."  It was by far the scariest time of my entire life, aside from when my daughter required life-saving lung surgery to remove a tumor the size of an apple from her tiny chest at just 4 weeks of age.  THAT was the scariest time...this was the 2nd scariest...it was an ordeal, for me, my husband, my two very young children and my parents - who gave up 1/2 of their year to move in with us and help us with everything, big and little and in between.  It was a trying time, a scary very uncertain time, but all the while, we never lost hope...we never expected less than a miracle...and by the grace of God, we got one...we got alot of them....

Below is a poem that took several weeks to write...I decided to share it on here because I believe in it...I hope you like it....

MAKER OF THE UNIVERSE 

Maker of the universe, of fire wind and rain

How was I to go through that and ever be the same?

Maker of the universe, Your strength so great and true

How was I to find the strength if I did not lean on you?

Maker of the universe, Your love so strong and sound

You wrapped me in your tenderness, I prayed I would be found.

Maker of the universe, You carried me through my fears

In your arms of love and safety, you wiped away my tears.

Maker of the universe, You know me like no other

How am I to be a better person, wife and mother?

Maker of the universe, forgiveness is your doing

Give me grace when I have sinned and lead me where I’m going.

Maker of the universe, all praise and glory is yours

You alone are the reason why I’m standing on these shores.

Maker of the universe, You’re full of awesome power

Give me strength to carry on until my final hour.

Maker of the universe, I can finally see the light

My days are turning brighter as I’ve battled through the fight.

I made it through the toughest times, with You I have not faltered

My path, although a crooked one, I never would have altered.

---------------------------------

You see…struggles are perspective-based, it depends on how you view them

Don’t question why or second-guess, to do so is just futile

Instead…accept the things you cannot change and use them for good purpose

To live your life, as your Maker would have you live it, and praise Him for all things.

God is Great…Expect Miracles

I'm HOME...And On The Mend...

Well, a month in the hospital is something no one expected...ever! But I'm home! Finally...and in time for Christmas. Like my surgeon warned me, there was the potential for complications and I had several. The first surgery (the only one scheduled!) on 11/15/12 went well, all things considered. It was a long and grueling surgery and it was very painful coming out of anesthesia with 32 pedicle screws and 2 new rods on either side of my spine. But little did I know, that would be the least of my worries. 5 days later, I was put on the emergency surgery roster for excess fluid drainage from my 20" incision. The "washout surgery" was supposed to take about an hour but it took 4 due to the discovery of blood clots and CSF (cerebrospinal fluid) in my incision as well as a staph infection. SO, once I was all cleaned up and closed up and back in ICU, the hardest and most surprising part was coming off the ventilator. I had an extremely difficult time breathing on my own apparently and it took many hours for them to successfully extubate me without stopping breathing or having my oxygen levels drop. Eventually, I was moved to back to my room. The next day, I had trouble breathing and it was painful to take a deep breath. After an x-ray, it was discovered that I had bilateral pleural effusions and later that afternoon, my Dad came back to the hospital to be with me while I had the fluid removed from my lungs (well, really the area around my lungs...the space where your organs lie is called your pleural cavity; mine had filled approximately 40% with fluid).

After 8 days, I was transferred to a nearby inpatient rehab hospital, which was nothing like the experience I had when I went there in January following my initial fusion. The "room" was more like a "ward," holding 4 other patients and we were all sharing a bathroom and shower. It was a daily occurrence to see urine-soaked adult diapers on the floor in the bathroom and for a somewhat self-admitted germ-phob, this was my worst nightmare. "Privacy" consisted of pulling my curtain over in an area which barely covered my bed and having a "private" discussion with healthcare providers there was impossible. Aside from that, I had completed just 4 days of therapy before being transferred back to my original hospital (where I had surgery) for high fevers, chills and night sweats. I spent 13 hours in the ER before being admitted to a room and at that point, I had gotten very little pain medication and was in a ton of pain. It was nearly midnight by the time I had gotten a room and I arrived at 10:30am so to say it was a long day is an understatement.

The next day a ton of doctors came in to see me and by mid-morning, it was clear I wasn't going anywhere anytime soon. I had a fever of 102.6, chills so bad my teeth would chatter and my body would shake, sweats that required a change of clothes every 2-3 hours because I was soaking wet from the fever and a rash on my stomach and back. After a week in the hospital, 1000 blood tests and fevers that ranged from 102 to 103.8, the doctors were stumped. By the end of the week my blood count had dropped to an extremely low 6.4 (normal is 12), they decided to do a CT of my entire body - and they reserved an OR "in case they found something."  HUH??? In case you FIND something?!?!?! I was terrified. They didn't even know what they were looking for...yet they reserved an OR 'just in case.' Well, by the grace of God the CT revealed nothing abnormal...it was negative (thank God).

It was determined that when they put me on this medication to treat my staph infection from my incision, I had a severe allergic reaction to it. I had been on in for almost 2 weeks at this point, which is when a reaction would most likely occur. Allergic reactions are common but according to the doctors, an allergic reaction to this degree is not - as is having all 3 top symptoms: high fevers (over 102.4), chills and sweats, and rash. Lucky me I had all three. So once the medication was stopped and my system was continually flushed with the IV fluids, I started to improve. Within 3 days, I felt like a new person...no fevers, no rash, no chills or sweats. So I was discharged late Tuesday night, and as my husband carefully got me into the car, the cold air on my face felt amazing...so refreshing...he shut the door and by the time he opened his door and sat down, I was holding my face and bawling my eyes out...I was going home...finally...one month after entering the hospital for back surgery, I was leaving...having overcome so much more than surgical pain...I'm so grateful for being home - - and for being home in time for Christmas is just an extra special bonus. We definitely hit some bumpy and scary roads, but we made it...I say "we" because I didn't do this alone...my family played a host of roles including but not limited to babysitter for my 2 kids, cook, taxi, psychologist, listener when I needed to talk (or cry) and friend. "We" could not have done this alone - and "we" are very grateful that we're ALL here to celebrate the holidays together. I know 2013 will be better than 2012 - it certainly won't be as challenging and with the new year brings new hopes, new dreams and new experiences. And "WE" are looking forward to them all.

9 hours to go....

All I can say at this point is...there's no turning back! I'm about 9 hours away from what I am praying will be a safe, successful spinal repair of a badly fractured T12 as well as an entire-length spinal fusion with the exception of my neck. When all is said and done, I will be fused (literally) from top to bottom...but "All is well."

At bedtime, my 3 yr old cried for me for 10' and after that I just had to go in and hold her - rock her - one more time....before....well, then I went into my son's room and he was a little less upset but no less emotional - so after calming his fears of me going into the hospital (again), I reminded him that next week was a big day for Mommy - and that it just so happened that my birthway would be the same day as Thanksgiving this year - and he thought that was cool. BUT, then I made him promise me he would draw me a picture of a "Burkey" - - and he looked at me like "huh?" - - and I said, "Yep, I want a picture of a big fat yummy "burkey" - a birthday turkey! Can you make me one and color it in and draw a bunch of candles on it for me!?!?" And my son, "the professor" as we call him says (as he's giggling the sweetest little giggle you've ever heard) "Yeah, I will...but Mom, can't I just put a '4' and '0' on it...I don't want to draw 40 candles!"  HAHAHAHA!!!  That's JUST what I needed - a good laugh myself, complements of my almost 5 yr old. God I love those kids...tantrums and 'breakfast with a big bowl of grumpy flakes' days and all...they're my life...and I'm so blessed to have them in my life.

 

So with that, I hope I left you with a smile on your face and as much hope in your hearts as I have in mine. My "family" has grown by leaps and bounds over the past year, and I am so incredibly grateful and blessed to have each and every one of you in my life. I honestly don't know how my family and I could have managed to make it through this year without ALL of your love, support and friendships. So don't worry too much - I have an incredibly talented surgeon, an unbelievable support system and a solid faith in God that I will be ok...and in the not-too-distant future, my family and I will wonder how we ever weathered that year...2012...

 

Until I see you again....