Deja Vu...Wasn't I Just Here???

Well, all I can say is "WASTN'T I JUST HERE?? DIDN'T WE JUST GO THRU ALL THIS??" In just 6 weeks, i will have my 5th spinal reconstruction - my 3rd of this year alone. The thought of that just hasn't really hit me yet. I can say it....but it's almost like i don't really believe it yet. But like it or not, that date (OCT.30th) will come and I'll be back on that operating table before I know it. This time though, it needs to work. It needs to needs to needs to work! A broken back is extremely painful, for those of you who have never experienced it. Back pain in general, even without a broken back, is at best excruciating at times. If I hadn't broken my back in mid-March, I truly believe I would be doing very well at this point (8 months post-op). But, that's not what happened. So we move forward. Do I have a choice? Quite simply, no.

I get asked ATLEAST 2-3 times a week by someone, anyone - a friend, a family member, neighbor - they say, "I don't know how you do it. Two youngs kids 3 and 5 and all that goes with it." And again, i just smile and, "Quite honestly, I don't know either - all I know is that I don't have a choice. I don't get to sit and moan and groan about what hurts and boo hoo to the kids." They're kids! They're just doing what kids do - it's ME, it's Mommy who feels broken and is in constant pain. I guess if I were to really answer that question honestly, I'd say, "Well, I pray...alot lately - and i just get by and live in survival mode." As long as the kids are clean, fed, dressed and semi-happy (haha), then that's good enough for me. And by 'semi-happy' I mean not throwing themselves on the floor having a tantrum over which sneakers to wear or what princess panties to wear!  There is some laughter in our house but honestly, it's so hard to be a happy "good" Mommy when you're in constant, unrelenting stabbing pain with any movement. SO, like I said - we're in survival mode and we're getting by - taking each day as it comes and doing the best we can to be happy, polite, loving and respectful to one another.

So, I am T-minus 6 weeks and counting...the surgery is expected to last approximately 8 hours and it will be done at Cooper again. As you've probably read, I'm fused L1-S1 into the pelvis. With this upcoming surgery the doctor will remove the rods, add screws on either side of my spine from T12 (the broken vertebra) all the way up to T2 - - basically my entire back will be fused from top to bottom including my pelvis. He will then extend rods on either side of my spine to stabilize the entire thing. The #1 risk is bleeding, which I had a big problem with on the 2nd surgery of this year with losing 1/2 of my blood volume. The second biggest risk is infection - apparently because I have so much scar tissue from all of my previous spinal reconstructions, all that's left is scar tissue (whereas someone else would have muscle). Apparently, scar tissue has a very high incidence for infection...great...just great...SO, i will be on antibiotics again before and after surgery, and they will also re-infuse the blood I lose back into me during surgery after filtering it - and again I'll have to donate 3 pints of blood (1 pint a week 3 weeks before surgery).  YUCK - that's the worst part. Well, one of the worst parts. So that's the summary of what's happening and what WILL happen in just 6 weeks.

As always, your prayers and support are very much appreciated.

8 Weeks and counting....

Well, a LOT has happened since last i wrote back at the end of July. And i apologize for not keeping up with my blog but i didn't feel it was important to write about the minutia of my daily struggles or reading depressing posts, so i waited til i had something worth writing about to post. You get the idea.

Anyway, to start....the shots i had for "SI dysfuntion/arthopathy" didn't work because as i said all along, it's not my SI joint (sacro-iliac joint) that is causing my pain - but hey, what do i know? I'm just the patient. But the pain dr and my ortho dr insisted that it was most likely the SI joint giving me pain and problems.  Uh...huh...right...okay then, so i get them done - wait - wait - and wait some more and nothing (as i expected). So once it was clarified that it was a big waist of time (my interpretation not theirs of course! haha!), i decided what's the point in waiting [for surgery, that is]...this back brace that i've been wearing since March 24th is not working (that's over 5 months!) - and I wore/wear it religiously, even now, when i don't really have to wear it anymore...i wear it...just in case - oh let's say I fall off a porch, for instance!  It's good to have it on.  And speaking of falling off porches, which i did last week without even thinking about it, accidents can and do happen - so i wear the brace all the time.

So on August 25th, my Uncle Larry took me to the sureons office to discuss, ask questions about and discuss the specifics of my upcoming 3rd spine surgery.  I, myself, even typing this can not believe #3 is just 8 weeks from tomorrow:

          WHAT:     3rd back surgery (see below for details)
          WHEN:     10/30/12
          WHERE:   Cooper University Hospital
          WHY:        T12 transverse process is still broken with no signs of healing
          TIME:        Early AM on Tuesday 10/30
          LENGTH OF SURGERY:    Estimated at 8+ hours start to finish

Here's what Dr. Clements will do to stabilize my back and T12 fracture:

• He will go in and explore the fusion, tighening any exhisting loose screws, removing any bone spurs that may have formed.
• He will ADD pedicle screws from 1 level above where my current fusion beings (L1); so in my case he will first add screws upward starting at T12,11,10,9,8,7,6,5,4,3 and end at T2 which is very high up on the spine--S1 to T2---that's a 15-16 level fusion...that's enormous.
• He will then REMOVE the current rods and put 2 new rods fomr T2 to T12.
• The major risks for this surgery are BLEEDING & INFECTION.  It was explained to me and my Uncle as being a lot more risky with regard to bleeding and infection due to the number of major back surgeries I will have had on my spine *which 4 before this surgery* He said because i have so much scar tissue, that makes me much more susceptible to infection. I had NO idea scar tissue had a higher incidence of infection as opposed to muscle.  And basically since my spine is ALL scar tissue up and down my, back why he said that.
• As for the loss of blood (last surgery i lost HALF my blood volume, he's going to add a blood recirculation machine so whatever blood I do lose will go right back into my body and then after surgery, i'll also get the blood that i donated back as needed.

SO there ya have it.  The "nuts and bolts" of it all.  In 8 weeks this will all be a distant memory!

So here's some good news: our Katie Kakes spent her first night in her big girl bed last night with NO problems whatsoever!!!  She LOVES her new princess sheets and blanket and pillow! Thank goodness for Walmart!  And Matt starts soccer next Saturday so we're very excited about spending our Saturday morning hour at his games :) - - they are, and continue to be my #1 priority in all of this and i want to try and keep everything as normal and routine as possible for their sake. And yes, my Mom & Dad will be shortly before my surgery to help out with the kids and help with me! I'm so blessed to have such loving and supportive family and friends.  I honestly don't know WHAT i would do without them in my life. I am so grateful to have them during such a scary time. But we WILL get through this. We will.

Here we go again...Surgery #5

Well for any of you who've been following me and my blog, I thank you and wish I had this earth-shattering wonderful news to share with you all...BUT, after another visit with my orthopedic surgeon, such is not the case.

Back in March (24th to be exact), I somehow broke my T12 transverse process.  I was fitted for a TLSO (a back brace) and spent a month in a rehab hospital getting strong enough to come home. I came home and was doing fairly well but continued with pain of varying sorts.  Slowly, "things" started getting harder, my balance was getting worse, my strength seemed to wax and wane. My entire right side from my knee to my shoulder blades started to hurt more and more. But my doctor kept saying "Everthing looked fine" - everything was clearly NOT fine. I fell on my bedroom floor last weekend and my right foot continues to turn purple if I, my leg goes numb when out for breakfast and my right foot is always soooooo much colder than my left.

Today, the orthopedic surgeon was clearly disappointed to see that the T12 has not healed at this point. It should've healed by mid-May, so by 4 months it most definitely should have healed. It is still broken clear thru side to side, left to right thru solid bone (SEE BELOW: dead-center eye level)

So with that news, the only way to fix it and stabilize the spine and vertebrae is to extend the fusion up to T2-3.  He would leave the current screws in place in my lumbar spine, add more screws on either side of my spine up until the point at which he was satisfied, remove the current bars on either side of my spine and then place new ones (bars) the entire length of my spine.  Sound familiar?? Didn't we just DO this??  Ugh.  I often wonder why he didn't do this to begin with but at the time, his answer was "Your thoracic spine is solidly fused at this point so there would be no point in refusing that area."

So, I don't know...that's where I am...Oh yeah, on Monday my god-father is taking me to have spinal injections into my SI (sacroiliac) joint and tibial nerve under sedation. Thank GOD for sedation, and for poor uncle who will be here at the not-so-bright but very early time of 6am.  His hope is that it will help with my leg pain and numbness and my right hip pain.  Fixing T12 by fusing all the way will hopefully fix the very painful areas along and just right of my spine.  Dear Lord, I pray it works.

A bump in the road, but all is well....

Well, last week was interesting, to say the least.  On Friday, I was 911'd to Cooper with excruciating chest pains that didn't let up after about 45' - and at that point, the pain was traveling up into my left shoulder.  It was very scary.  I called my cousin, who dropped everything and came over to watch my son, and within 4' of the call, a police cruiser and ambulance arrived (with no sirens or lights, at my request, as i didn't want to scare my son or bring attention to the neighbors about what was going on). I was admitted thru the ER and was discharged Sunday night...it was all due to a stone (even though i don't have my gall bladder anymore!) that was blocking my common bile duct, which caused a bit of pancreatitis - the actual diagnosis was something called "post cholecystectomy syndrome.".  VERY painful, whatever it was and i'm just glad it's over and that I'm home again.  My mom came up and will spend about 2 weeks with me...i'm really "wobbly" on my feet, as alot of people have mentioned to me, and i'm not quite sure why -- I saw a pain management doctor last week and maybe it's the new meds...my legs are still really really weak...but i can't do outpatient PT until the T12 transverse process heals.  I'll be going for an xray while my Mom is here and i see the surgeon again in a couple weeks.  HOPEFULLY it has healed by now...i sure hope so...

So I need to tell you what an amazing group of people from my church, HOPE Church, who name i still believe was meant for me...anyway, meals have been arranged for the next couple weeks as well as some light housekeeping and shopping if i feel i need it.  Rides to/from doctors offices, whatever!  They're ready and willing to do it all.  Through all the trials and tribulations, I am constantly reminded of God's grace and love - HE is in control of all this, not me - and HE will get me through it...whatever "it" turns out to be.  Through it all, I am blessed.

A Long & Narrow Road....

Hello to everyone and please accept my apologies for not updating my blog as I intended.  The 4-5 weeks have been filled with ups and downs...the ups are that my daughter is finally potty trained! Yay!  She starts preschool in September and just finished a week at Vacation Bible School and she absolutely loved it!  Another up is that Matt starts what we call "van camp" in a week or two - he goes all day to an outdoor lake/camp and does all the things we wish we could do when we were little (horseback riding, swimming, canoeing, ropes courses, nature hunts, arts & crafts and of course every sport you can think of --- especially hockey!)  Another up (and we realize we're crazy, but crazy in love at this point) is that on Father's Day, we picked up our 8 week old yellow lab we named Molson (as in Molson Golden Canadian...the beer...seems fitting and my Canadian husband of course loves it).

But with some up's also come some downs...one is that we miss my parents and their help and support. It was a blessing to have them here with us for so many months and we don't know how we would've made it thru without them.  But the biggest down, by far though is something i just found out yesterday with an appointment with my surgeon.  There is a possibility that i will need yet again another surgery.  This would be my 5th back surgery.  Not a track record i'm proud of or boasting about.  As you know, on March 27 i broke my T12 transverse process clear thru left to right thru solid bone.  Solid bone!  The surgeon has no idea how that even happened because that bone is apparently a very big, thick one.  In any event, i somehow broke it...which landed me back in the hospital for 8 days and then inpatient rehab for a month.  I've been wearing this clamshell brace religiously and despite that, the fracture has still not healed.  He said that if it does not heal within the next 2 months, that i will need a complete revision of what he did during my second surgery.  He would have to remove all of the rods and screws he worked so hard to "install" and then extend the fusion up all the way, top to bottom, literally.  He nor I want to have to go thru that again.  It was that second surgery that really put me over the edge last time so the thought of having to do it all again is just too much sometimes.

Like i said when i created this blog, i'm using it as an outlet - sometimes a 'venting to get it out' outlet and sometimes an information outlet for others who just may have go through this at some point.  I try to be upbeat and optimistic but i'm not going to lie - it's a "long and narrow road" and sometimes it just baffles me how much my body if failing me.  I'm doing everything i can but it's still not "listening" (lol)....this fracture HAS TO HEAL - - and if it doesn't, then i will have another surgery. 

SERENITY PRAYER



God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
enjoying one moment at a time;
accepting hardships as the pathway to peace;
taking, as He did, this sinful world
as it is, not as I would have it;
trusting that He will make all things right
if I surrender to His Will;
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next.
Amen.

Thank you in advance for the continued prayers!

Home Sweet Home.....

Well WHAT a crazy 5 weeks it has been in the Millar household - or shall I say to be more accurate what a crazy 3-1/2 months it has been!  BUT, despite the highs and lows (of which there have been many), we're all still here, still surviving what life throws at us.  I can't BELIEVE i was gone for 5 weeks as i just came home yesterday after spending a month at Magee Rehab Hospital and before that a week at Cooper in Camden.  FIVE WEEKS.  I came home and felt like a stranger in my own home.  It was surreal...and overwhelming.  It was a bit unfamiliar and yet, it was home.  MY home...in true "Michele" fashion, I had to have all my ducks in a row - organize this, straighten up that and so on...and then in the silence of it all, i just cried...i'm not sure why - but i just did - like i had to let it out - i was just so happy to be home but at the same time, so sad for all the time that i had missed....i cried for fear of the future: what if 'it' (the broken back that no one knows how it happened) happens again...how do I move on from here without living in a bubble and feeling like i can't do anything because "it" might happen again.  So i'm trying (now day 2 home) to live a normal life and do normal things yet very cautiously and carefully, which is really the only way I can do this!

So the kids are thrilled to have me home -- Kate went down for nap today and said "you not go no where mommy, you stay here." LOL.  And the first thing she said when my Mom went to get her was "Mommy here now - she not go not where, right Nana?"  Despite the terribly improper 3 yr old English, it just melted my heart.  And Matthew kept asking if he could get me a snack or some fruit - actually he must've asked me 10 times but it was so sweet.  It's definitely awesome to be home I'd like to keep it that way for a long time!!

How do I feel: Exhausted. Completely 100% totally exhausted.  That'll improve i know, but wow, i'm wiped out. My appetite is coming back, my pain is being well controlled, and I'm able to do quite a bit - walk with and without a walker depending on how far i'm going, do the stairs with someone in front and/or behind me, get dressed using all my OT "gadgets," and if hungry, make a snack.  Sounds so trivial, but coming from completely helpless to where I am today, I am so incredibly grateful.  I feel blessed to have such a loving family and friends who've been 'riding this out' with me.  I don't know what i'd do without them.

So, at Magee, i not only had a wonderful OT & PT but also had the opportunity to do art therapy and horticultural therapy...what a great therapeutic outlet when you're in the hospital.  It makes you forget what hurts and why your there - even if only for an hour.  I thought i'd share some things I 'created' with you:

 My daughter Kate smelling the flowers on the rooftop deck at Magee - we could all learn a lesson about stopping to smell the roses.  Slow down, life goes by too fast - stop and smell the flowers and enjoy the colors of the world through the eyes of a child.

 And YES, i did write these - so many people have said to me "Did you write this?" and my answer "Yes!" It was a very therapeutic outlet for me to incorporate two things I love most: writing and calligraphy.  The first one "BELIEVE" is a motto or term for lack of a better word that Magee uses to describe themselves. And now having been a patient there, i see what they mean...."BELIEVE....in a way back."  That is what inspired me to write the one above.

The one below was something I thought would sum up my stay at Magee using the 5 short letters in it's name: MAGEE.  I came in knowing that miracles happen every day and i believed I was worthy of one. So i "BELIEVED" (there's that word again) in "Miracles happening."  Every day, we as patients are working to achieve our goals - the harder you work, the further you'll go - plain and simple.  "Greatness of staff" speaks for itself and no one can attest to that better than a patient.  They are truly wonderful, giving, supportive people who want the best for you - and that goes from therapists to doctors to CNA's, rehab aides and housekeeping...everyone was willing to help in any way possible.  You don't find that everywhere you go and Magee sets the standard very high for others to meet in my opinion.  The efforts of the patients again goes with working to achieve your goals.   Once you leave here, the possibilities are endless.  You are not defined by or confined by your 'title' - patient, therapist, CEO, Vice President, etc. What I mean by "Endless possibilities" is that we are all capable of great things - some small, small large - but whatever our contribution to this world, the possibilities of those contributions, achievements or goals are endless!  You never know where the next "miracle" or "achievement" may happen and to have so many staff members supporting and encouraging you along your journey, it makes for truly "Endless possibilities."

Discharge Date (Thurs., 4/3/12) from MAGEE....

Well, today I was officially given a discharge date of Thursday, May 3rd.  At that point, I will have spent exactly 4 weeks here.  My pain has come down somewhat but I am certainly not pain-free and I still have a long way to go in order to live the life I want and need to live which includes less pain, more smiling and alot more time playing with my children (3 and 5 yrs old)!  In my time here at Magee, I've made the most beautiful floral creations in horticultural therapy (now I just have to work on keeping them alive!!)  I've used water colors, wax, chalk, paints, sketch pencils etc in Art Therapy to make things that remind me of home: a heart with the names of my family members in it as well as a Millar Family Crest that i'm still working on - now that was a biting off a bit more than I could chew but what the heck.  We'll see how it turns out.  I've worked my butt off in therapies and I've had times where I just had to sit in the silence of my room and cry because that's what my mind and body needed to do.  I have a private room, for which I am soooooo incredibly grateful - and I have a view of the city of Philadelphia that would just make anyone say "Wow!" (I'll post some pictures when I get home).

I am learning alot about myself being here, not only as an inpatient - but as an Occupational Therapist who not only WORKS in a rehabilitation myself, but it now a patient in on.  I can tell you, it is VERY different being "on the other side."  I do believe that I'm being a very good patient (I try not to whine and complain too much - haha!) - I think it helps me, in a way, being a patient as well as a therapist, because I can use the same language the therapist uses and when I look at them and say "I can only do one more," they know I mean it.  I'm pushing myself as hard as I would push my patients, so in a way, I'm getting a taste of my own medicine...which i don't mind as long as it gets me out of here leaving better than when i came in!!  I'm learning about perspective in a way no one could ever teach me or explain to me, too.  My perspective has changed from that of a therapist, encouraging and often times requiring more of my patients, to now that of a patient, who is (or maybe isn't) always able to give it all I've got at times due to pain, fatigue or plain old motivation.  I KNOW HOW IT FEELS NOW.  I also know i'm not here forever - and the time I'm here I need to work as hard as possible - "encouraging and requiring" more of myself (the patient) because I know my time here is limited.  The rewards in the end should (no, they WILL) outweigh the trials, tears and the "I can't do it's".  All over Magee, you see "BELIEVE." on a wall in their gym hangs a poster.  It reads (in part) "BELIEVE.....in the art of inspiration. In the craft of creating hope and shared vision for recovery and return...our passion for what's possible makes each and every day a new opportunity to inspire. And when we succeed we receive our inspiration.  This is the art of MAGEE Rehabilitation Hospital."  And this couldn't be more true.  As a therapist, I can truly see and honestly appreciate how what we do as therapists (speaking as an OT now) is truly a "craft of creating new possibilities" because the dawn of each new day creates opportunities for inspiration and hope for both me the "patient" (as is the case right now) and me the "therapist."  It is truly a work of art to get your patients to believe in not only themselves but their own abilitlies and more importantly, their endless possibilities.  Every day, we (speaking as an OT) paint on the canvas of our patients - and every day they paint on it as well...but together as patient and therapist, wecreate our own craft of "hope and shared vision for recovery and return."  BELIEVE...not only in yourself and your own possibilities but believe that you are capable of great and life changing opportunities despite the challenges that have been placed before you...if ever a word to say it all, B-E-L-I-E-V-E.