"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....

 



3 Days To Go...

I can't believe I only have less than 3 days left. My husband left at 5am this morning for the airport and week-long training for his new job. That was hard. Knowing he won't be with me in the 'holding area' just before I go in for surgery was really really hard. But neither one of us could change the situation and so we had to accept it and look on the bright side: he'll see me the day after my surgery (on Friday night) and will come straight from the airport as soon as his plane lands. Another bright side is that my Dad will be with me and will have the daunting task of telling the surgeon, "Take good care of her" not once, not twice, but five times now. And I trust that my skillful surgeon and his team will do just that. So instead of crying about what I can't change, I'm making a conscious decision to accept it and hope for the best. 

Today is Picture Day at my kids' school...so of course my daughter was beside herself with joy that she got to wear her favorite dress - my son, well he wasn't quite as overjoyed at the thought of having to dress up in  khaki pants, a button down shirt and sweater. But Oh My LORD, did they look adorable all dressed up...and so grown up too....(sniffle sniffle)....my "babies" are not babies anymore.  In fact, this morning while eating breakfast, my 3-1/2 yr old (out of the blue!) said, "Mommy! Hey Moooommmmmyyyyyy! I'm a 'people' now...I'm not a baby anymore...I'm a 'people,' like you and Nana and PopPop and Daddy" (and so on down the line). Gotta love how 3 yr old's talk. And she's absolutely right. She and her brother aren't babies anymore...they're 'peoples.' And my little 'peoples' have grown into such big kids already!

So with just 3 short and fading days to go, I'm trying to find things to do to keep me occupied and so what a great reason to have another manicure & pedicure 2 weeks in a row?!? It was wonderfully relaxing and it was nice to get out with my Mom for some much-needed pampering. And at the end of my pedicure, when my Mom had already finished and was waiting just a few feet away while sitting in a chair, I was abruptly and very sternly reprimanded by the girl doing my pedicure. I didn't understand one word the whole time I was there - EXCEPT the music! I just nodded and smiled and agreed with everything they said - they could have said they were charging me triple and I would've agreed. So, along comes a song on the radio. One I happen to like, and so quietly under my breath, I start to sing along! Who cant' help but sing along to Tao Cruz "Dynamite" or Will Smith's back-in-the-day 80's tune "Jiggy Wit It" (LOL!) Me!!!  That's who!!!  Well, this happy and smiling nail girl immediately scowled and looked up saying "NO SING!" At first, I didn't know what she said and so I repeated it to her twice saying, "No sing? As in don't sing??" And she again looked up again and said, "NO SING!" - and so what did I do??  Yep...you, guessed it...I sang!  My Mom and I smirked and giggled in utter disbelief at each other from across the room, trying desperately not to laugh out loud let alone, dare I say it, SING! It was hysterical. Ah, the little things in life - - like singing when you're "not allowed." It wasn't like I was ACTUALLY 'gettin' jiggy wit it' - I can barely sit and walk any distance without pain so it's not like I was actually bouncing around in my seat and wiggly all over the place!  Good grief!  Well, my Mom & I got a big laugh from it. I guess I've always had a bit of an edge like that - tell me not to or that I can't and I'm probably gonna! Nothing bad or illegal or anything but when I'm told not to sing when I'm getting my feet massaged and trying to relax!!  Seriously!?!? So that was funny - and for the record, SING WHENEVER YOU WANT!  Life is too short. Like that saying goes, "Dance like nobody's watching and sing like nobody's listening."

This may or may not be my last post before surgery depending on how things go over the next few days so I wanted to share this with you all in case I forget.  I recently got an email from a former co-worker of mine (also an OT). She and I always got along very well and I really miss working there and the people with whom I've worked despite having only worked there briefly. Anyway, in her email, she commented on "how strong" she thought I was. And my immediate knee-jerk reaction is, "Uh, have you seen me lately?! I'm a lot of things but strong is not one of them!" I see myself as just the opposite and said to myself, (self...) "I'm glad I come across as strong because I sure as heck don't FEEL or LOOK strong!" But then something makes me take a step back...it's perspective...it's how I see myself at this point vs. how I saw myself several years ago or even decades ago. Playing soccer all the way up through and including college, I would definitely agree that I was strong back then. Having had two children without pain medication or an epidural, yes, I was most definitely strong then too. But now? Barely getting thru the day and having difficulty doing the most basic tasks (like getting dressed, folding laundry, playing outside with my kids) - I'm not strong at all when I look at myself in those terms. But then I step back...it's perspective...again. I may not have the physical strength I had 20 years ago (or even 5 or 10 years ago), but I've gained strength mentally and spiritually that I would have never believed possible 5 years ago. I have found new strength, renewed strength in things like relationships...with friends, with family members, with myself...with God. I realize that my physical strength may not be what it once was (and most likely it will never be that way again) but my inner strength (strength I didn't even know I had until I was faced with what 2012 has brought me) has grown, matured, flourished in the face of these trials, set-backs, pain and uncertainty. I have grown in ways I never thought possible despite my declining physical strength. At times my mental strength is pitiful and I crumble but that's being human...and that's ok...and what I'm facing is painful and difficult, not just for me but for my husband, my children, my parents...everyone.  And so if someone makes mention of my 'strength,' I give it all to God's grace because without Him I wouldn't be able to get through all of this.

I see it like this: God is driving this train and I'm just going along for the ride. Granted, sometimes the ride is pretty bumpy and sometimes it feels like the train is going too fast and will derail at any moment. And if it does, He is with me; I am not alone. I will never be left alone. He promised and I trust Him. As isolating as this situation feels and as small as my physical world has gotten as a result of my pain and limitations - I am NOT alone. I think for the first time in my almost 40 yrs of life, I'm actually starting to believe that. And that's progress....HUGE progress from where I was 18 months ago! 

"My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." (Psalm 62:1-2)

6 Days To Go....

Well, this time next week, on Thursday night (11/15/2012), I will hopefully resting comfortably in ICU following what I hope and pray will be a very successful surgery. I'm trying to keep myself busy, mentally and physically - well, ok mostly mentally...the physically part basically consists of me walking my 7 month old yellow lab, Molson (as in the beer) around the block, but at least it gets me out of the house and doing something. I've also become highly skilled in the art of folding and refolding clothes - mainly my kids clothes - they could care less how long it took Mommy or Nana to meticulously fold their little shirts and pants and place them neatly in their drawers. They just rummage through them like the kitchen 'junk drawer' (c'mon, you know you have one too!) My husband and I went out for a loooooong overdue 'date night' last weekend and we had a great time. It was so nice to just sit and talk and not worry about whose touching who at the dinner table or whose tossing what they don't want to eat onto the floor. So this is what sanity feels like?!?!  It's been so long I forgot what it felt like, and it was just wonderful to get out with my husband, even if it was only for a few short hours. We have another 'date night' with my church group this Saturday night as well - - woo hoo for us - - going out 2 weekend nights in a row!  I can't wait to get out again; it will be our last date night for quite some time...

Mentally, it's been a bit harder for me to occupy the spaces of my brain and retain important or useful information  for more than a few minutes...and then I'm confused and the information and what I thought was correct becomes jumbled and incorrect. And if it requires more than 2 steps, forget it!  Ok, (1) open microwave, (2) insert strawberry PopTart....uh....oh yeah, press 'start' - NO, enter 20 seconds then press start. And be sure to remove the FOIL WRAPPING! You should SEE the sparks that fly when you don't (not that I know first hand or anything....I'm just saying...)  Anyway, if you ask anyone whose had regular contact with me, especially the poor (and very patient, understanding) teachers at my children's school, they'll tell you just how mushy my brain and memory has become. If I'm not forgetting this, I'm mixing up that. It's terrible. And for anyone who knows me....really knows me, they know that I am sooooooo not like that. Not all that long ago, I was sharp as a tack, had a list (and highlighter) for anything...no erasing, just rewrite the whole darn thing! Now I'm lucky if I remember to bring my phone, which contains the list of items I need at the store. And I'm no psychologist, but I'm fairly certain it's due to the amount of stress and anxiety I'm feeling at this point. If I'm not worrying about whether or not I'll be ok after all is said and done next week, I'm worrying about my husband, my 2 young children, my parents. All of this has taken such a toll on my family. And we're all exhausted...mentally, physically, spiritually...2012 was definitely NOT one of our better years and I'm very hopeful that 2013 will be alot better for us.

My friend at church, who is extremely active in a variety of ministries, including book studies sent me this excerpt from a book they're reading called "Unglued," by Lysa TerKeurst. In in, the author is discussing some Bible versus (Romans 12:2, 2 Corinthians 10:5, Jeremiah 29:11). She sent the following to me because when she was reading the book, she thought of me. It's no secret I've been struggling...with everything...I will end this post with an excerpt from the book that seems have my name written all over it...it is so unbelievably true no matter what mountain you're climbing or what stuggles you're dealing with.

"I can't control the things that happen to me each day, but I can control how I think about them. I can say to mgyself, 'I have a choice to have destructive thoughts or constructive thoughts right now. I can wallow in what's wrong and make things worse or I can ask God for a better perspective to help me see good even when I don't feel good. Indeed, when we gain new perspectives we can see new ways of thinking...But I couldn't just say it or think it. I had to believe it. And in order to believe it, I had to settle a matter of trust in my heart. Could I trust God and believe that He is working out something good even from things that seem no good? You see, if I know there is potential good hidden within each chaotic situation, I can loosen my grip on control. It's easier to loosen my grip when I can see the good. When I can't immediately see the good, loosening my grip becomes a matter of trust. Either way, as long as I believe - really believe - God is there and that He is out to do me good. I can stop freaking out trying to fix things on my own. I can rest in the fact that God is in control which means I can face things that are out of my control."