Sunshine After the Rain

There is nothing like a 3400 mile road trip to bring out the best behavior in everyone – all stuck in the van for what amounted to north of 64 hours.  My apprehension taking Savanna on such a long road trip was high.  Her demeanor the past three months tempered my expectations.  In addition, results from the Bronchoscopy and EGD scope of her esophagus showed nothing was wrong.  Rebecca took her that day, and I was home with the other kids.  I remember getting the call, and actually feeling depressed.  I desperately wanted something found to be affecting her that could explain her lack of eating and near constant agitation.  Despite the fact she is not having seizures, we cannot live like this.  For the first time, I actually thought maybe we made a mistake with the brain surgery.  It was like a dark cloud was following her (and me) and the rain just wouldn’t let up.  I said a prayer that day for God to give me strength to carry on.

Yes, there was some less unhappy time, even some photo opportunities in the past 3 months.  But, I remember no discussion prior to surgery other than the common complications and rare unintended consequences, such as infection, hydrocephalus, and paralysis.  I did learn how to help her regulate her behavior, but it required a lot of heavy sensory input from me, and it was exhausting.  I just could not do it for more than 2 or 3 hours at a time.  At which point, I just had to put her down.  She could not just be held without a lot of stimulation.  Here is a short video of what she looked like during most of her time awake since the surgery (just before the trip)

Travelling in the car proved easy really, as Savanna really enjoyed the constant motion and movement which is known as vestibular sensory input.  Knowing how to regulate her behavior externally through my actions, I actually expected an easy car ride.  But she wasn’t just easy to manage, she was really happy at times.  It was refreshing to witness.  At the hotel, the alternate personality emerged, (and so did the Ativan®).  An hour or two was all we could endure at that point, and we had to intervene.

First stop on the trip was my Dad’s place in VA.  They live in a modern log cabin on Lake Anna, a man-made nuclear power plant cooling reservoir.  Lake Anna is nearly 17 miles long, populated by people who love being near the lake.  The obvious enjoyment of lake living overflows from their property onto elaborate docks complete with second story living areas, slides into the water, dry docks for several different types of watercraft, duck blinds, and even an airplane hangar or two.  It seems more developed each time we visit.  Rebecca had to work in DC, so I took all four kids out on the pontoon boat with Grandpa and Grandma 2 days in a row.  We pulled them around on the tube until they just didn’t want to tube anymore.  I even took Savanna out on the tube with me, and she really enjoyed it.   Before, after, and sometimes during, was challenging with Savanna as usual.

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Then on the third day there, a miracle happened.  Her morning was typical.  Inconsolable for about 5 hours, then nap time, and then she awoke and didn’t cry!  Like the sunshine after the rain, Savanna was happy. It was like a new beginning that day.  I didn’t know what to think or even how to appreciate it?  It was a relief at first.  She wasn’t screaming and crying constantly and I assumed that she would start crying again soon.

She became a Mommy’s girl instantly.  She wanted little to do with me, especially when Rebecca was within sight or earshot.  How selfish was I to be a little depressed by this particular behavior, being the only one who could seem to regulate her for any length of time in the past few months.  The coming days saw another leg of the trip (550 miles to Louisville, KY) where the other grandparents and family live.  She could not have been happier once at Rebecca’s parents’ house.  She smiled.  She laughed.  She was very deliberate with her actions and movements.  Her cry changed to one of ‘look at me!’ rather than the boo hoo of ‘why is this happening to me?’  The shallowness of my thoughts during those first days would soon be overshadowed by the change we saw.

I really think God was watching us and was acting.  I tried to explain to those around her our first night in Louisville that this had just happened.  My words felt like they became awkward, as none of them have really seen her in the last 3 months.  I should have just kept quite.  Looking back, what did the past really matter anyway?

The joy of peace and happiness filled the air.  All seemed right in the world.  I learned on this trip not to disturb such joy with unnecessary conversation.  I am still learning how to choose the right words to formulate responses to questions from many different types of people.  I am still learning how to exude happiness, elation, and even satisfaction about how great she is doing compared to where she was less than 1 year ago.

I have immersed myself in her every detail of her condition and care, delving deep into how persons like Savanna ‘recover’.  I have results from Early Intervention testing, advanced genetic testing, detailed clinic notes from many types of doctors, and feedback from therapists who spend most of their time with kids like Savanna.  I spend time helping others work through similar situations, providing support, just trying to listen.  All of this activity brings gravity to Savanna’s situation.  Yes she looks great.  Yes, only Savanna knows what she is going to do in this world.  Yes to all the anecdotal advice we are given.  But my vantage point gives my a different perspective.

A broken bone healing is how I think many see Savanna’s situation.  During this trip, the cast came off, function resumed, and now she is ‘normal’.  Just put her back with the other kids, right?  What is your problem Dad?  What, she won’t eat?  Well, you need to learn how to feed her – don’t you know?  Okay, maybe.  Maybe everyone is right and I am over thinking some things [but I don’t think so].

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Most professionals would agree that the broken bone example is over simplification, despite how she is acting at the moment.  On this journey with Savanna, I am learning how to converse with people about her situation at various levels.  Numerous times on this trip I found myself misguided in conversational direction.  I was too argumentative with my know-it-all attitude, and too late to change course aside from shutting down the conversation.  Live and learn.

Character flaw aside, I really enjoyed also watching Tristan, Brandon, and Austin spend time with their cousins and especially Savanna’s happiness with her Mommy.  I felt blessed by the end of the trip.  We let Tristan have a camera during the trip and just let him go to see what he would capture.  Attached are some of the photographs he captured.  Each day I see a little man emerging in Tristan.  I wish I could just freeze him just how he is so I could have more fun with him at this age, but life goes on.

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Our trip back to Houston was without incident, and Savanna has remained for the most part happy.  She seems much more engaged with her surroundings when she isn’t just wondering around on the floor crying.  She is exploring, learning, and having fun.

We accepted the arrival of our Au Pair, Ruth, from Australia.  Ruth is a great addition to our family and the kids have warmed up to her quickly.

I am learning each day how to better appreciate a little sunshine after the rain.

-ken

Rethinking a Few Things…and Maybe Facebook Isn’t So Bad For Me.

Many years ago, I created a Facebook account.  I was really excited at how ‘connected’ I could be with people, even if I barely knew them.  I added a few ‘friends’ and then, it became an addiction.  Before long, it was out of control.  I had hundreds of ‘friends’.  Really?  No, not really, but according to Facebook I did.  Then, naturally, it just didn’t seem important for me to care about Facebook – at all.  If I wasn’t planning to call the person and talk to them, I really didn’t care that they were going to be ‘watching tv with my wifey tonight!’ or ‘…headed out to dinner with my hubby! yay!!!”  Really? (for those of you that do this, I am sorry if I offended you – keep reading.)  I made an attempt to ‘un-friend’ a lot of people I barely knew to reduce the content I was being bombarded with, but the result wasn’t what I wanted so I gave up on Facebook.  It did come in handy around Christmas when I was looking for snail mail addresses for the obligatory annual card sending ritual.

December 19, 2011 changed all that for me.  Our daughter was diagnosed with a rare and severe form of epilepsy, and her prognosis was not good.  It began with an ER visit, where I frantically used my ‘smartphone’ to try to send out an email to all of our extended family.  I sent an email to about 50 people to say an extra prayer for our daughter and attempt to explain the situation.  At least half of the emails bounced back since I didn’t have current contact information.  And then there was another 25 people who I thought would want to know, but didn’t have email information in my phone.  Uhg!

Like anything worth doing, some pain is necessary to be very successful.

I attempted to use email to send a mass email every other day or so updating everyone on Savanna’s situation.  It just got so difficult to keep up with incorrect addresses, who didn’t get the email but should have, etc., etc.  I turned back to Facebook in an attempt to seek help with my communication dilemma.  But, at least half the people I was emailing didn’t have a Facebook presence.  (What? How can that be?) Yes, for those of you who live on Facebook (and you know who you are), it is possible go through this world without Facebook and not feel left out or incomplete.   In the end, ‘blogging’ was the way to go for my story about Savanna’s Journey.  The sites with the nifty email subscription service are useful for my audience.  WordPress has been wonderful for me.  It has enabled me to do something I find therapeutic while also keeping loved ones and friends updated with the latest information.  Writing has always helped me find clarity in life’s moments otherwise blurred with information overload.  The ability to automatically post to my Facebook account has been reassuring that the intended followers are reached one way or another.

Anyway, a neighborhood friend connected us with a family who have a son diagnosed with IS.  They introduced me to a some Facebook support groups for parents with children diagnosed with IS.  This lead to more ‘secret’ groups for parents with children with brain surgery.  I had no idea this community was out there and organized in this fashion.  I got plugged back in to Facebook and have become very interested in a few of these groups.  This has led me to more stories about families like ours who have a child like Savanna.  The newly found connections through Facebook have been a good source of soul food as we navigate the waters of this catastrophic pediatric epilepsy.

As I read more new posts and comments in these groups, I think back about conversations I have had with the most hardened Facebook fans over the years.  They can’t understand why I am not using Facebook to manage my entire life, and I can’t make them understand why I believe Facebook isn’t the right application for me.  I know the door of criticism that I am opening by walking back some thoughts expressed in a rather explicit manner in the past.  Have at it with comments, which I don’t moderate.  But, in all seriousness, my life was completely different at that time.  And tonight, having finally found good practical uses for Facebook, I am rethinking a few things…and maybe Facebook isn’t so bad for me. (There I said it!)

-ken lininger

December 19, 2011: A Day to Remember Forever for the Liningers

What a year for our family.

December, 19th, 2011 :  The day we got the official news about Savanna.  It was a day filled with anxiety and nervousness.  Savanna had been through a lot in the last few days and we as parents had learned a great deal about her probable condition.  We were just waiting in the hospital on a Sunday afternoon, as we were told the doctor(s) were finally going to talk to us.  Then it happened.  Almost out of the blue, a team of doctors came in mid-afternoon.  Leading the way, and the only one who spoke was Dr. Mary Zupanc.  She said to us, “You have to mourn the loss of your normal child.  She is gone.  You need to start to prepare yourselves for what may be a very long and difficult journey.”  She went further to warn us that “90% of all marriages with a special needs child like Savanna, end in divorce.”  We didn’t know anything about anything at that point, and we later learned she was new to the CHOC family.  Her employment was the beginning of a new direction intended to make CHOC a leader in the pediatric neurology field.  The only cases she handled were refractory or intractable (severe & rare) in nature.  I don’t think we fully realized what that meant at the time.  It wasn’t until much later after the ACTH therapy, after the necrotizing pneumonia, after multiple LTM EEG’s, the installation of a permanent G-Tube, that the denial had worn off and we began to grasp the magnitude of our situation with Savanna.

Looking back, we could not have been more blessed than to be admitted when Dr Zupanc was overseeing the EEG monitoring at CHOC.  The Dr. reading the LTM patients EEG results alternate and Dr Z has the 1st and 4th week of every month.  Had she not been there, we might be in a very different situation.  She taught us just how catastrophic the seizure activity was for a baby of Savanna’s age.  More importantly, awareness of how critical it is to arrest seizures in children under 2 by any and all heroic action available.  Not acting aggressively can mean the difference between very different outcomes in development.  If you have read any of my recent posts, you know that this is not a widely accepted principle in neurology.  God was watching Savanna, and while the situation was bad, we could not have been in a better facility in terms of care for her specific needs.

The EEG report from the VTM ending on December 18th read, “possible lesion on left temporal lobe”.  Here we are about 11 months later recovering from epilepsy surgery where a cortical dysplasia lesion was removed from the temporal-parietal-occipital region of her left hemisphere.  For me personally, it is a day of reflection about what we have been through and how far she has come in such a short time.  I have taken the time in the middle of the night to go back through some of the pictures and the emotions of that day 12 months ago and many memories are still very vivid in my heart.  Some memories have faded.  Some memories I wish I could change by having behaved differently at that time.  However, trying to grasp the realities of the situation was difficult, almost impossible until we had a chance to live through it.  It reminds me a lot of the birth of our first child.  Many of you can relate to this.  You prepare, read the books, etc.  But some things you just can’t learn until the baby is delivered and you have a chance to experience it first-hand.  For many, it changes life dramatically.   Savanna has changed our lives by educating  us about how typical life is such a miracle.  A few statistics surrounding her journey from December 19 2011 thru December 19, 2012.

·         57 typical RX scripts filled, total insurance billing, around $25,000

·         14 Specialty Drug RX scripts totaling $164,000

·         Total processed health claims for Savanna, $798,000

·         Total processed health claims for the rest of family was an additional $85,000

·         90+ days in the hospital with Savanna, 14 days with Tristan

·         60+ hours on the phone during the second half of the year with the insurance company and service providers when Anthem’s system began filing Savanna’s claims under Austin when we went onto Cobra.  This resulted in many denied claims, and a waves of collections against us as the bills began accumulating quickly.

·         Gratitude that we have been financially fortunate and were both able to work and save for a “rainy day” prior to this experience.

·         Empathy for the 1000’s of families facing similar situations who cannot possibly be as fortunate as we are.

Savanna is not free of epilepsy, but seems to be free from the very disruptive seizures the were halting her development and assuring entrance into the contingent of Lennox-Gastaut sufferers.    Dr. Nitin Tandon performed the surgery and his office billed our insurance company $9999.00 for his services – of which his office collected a payment of $3292 from our insurance company.  It is an unbelievably small amount of money for such a far-reaching, life-altering procedure.   Compared to other types of surgeries, the cost versus benefit is off the chart and that is really an unfortunate reality.  That translates long term to surgical talent that is less likely to choose a path of epilepsy surgery expertise when they can make 5 or 10x as much money performing elective spinal fusions for example.  The vast majority of patients like Savanna are misdiagnosed and do not have the opportunity for such a procedure so early in life.

The changes in our lives as a result of Savanna’s birth have been significant.  We relocated our family.  I resigned from the workforce temporarily to manage and guide her care.  Rebecca took a new position in GE, and is dealing with a frustrating work environment that won’t allow success.  We contracted as a family earlier in the year, as we began to face fiscal challenges once foreign to us.  We are contracting again at the end of 2012 in light of the increased tax burden undoubtedly being put on our shoulders.  This situation has altered our financial planning which we once thought was sound.  Action has been  required to stay solvent, and these lessons will be passed on to our children.  Direct medical expenses related to Savanna’s care were a fraction of the total listed above, but the soft costs not directly attributed to Savanna’s condition were and are enormous and never seem to stop.  I have arrived at an understanding of why families earning far less would simply give up and let their neighbors pay for it through a vehicle called Medicaid.  We will never in our lifetime pay in Medicare taxes equivalent to what Savanna’s care cost during her first year of life.  To simply entitle ourselves to this presumed benefit is morally and ethically wrong in our opinion.  Regardless of the schooling, we will without fail teach our children that there are better ways to help those in need than government programs.

Watching our daughter suffer, tested our resolve.  It was so difficult, that I honestly believe death would have been easier to deal with during her most difficult periods.  Experiencing her seizures was like anticipation of imminent death for me.  There was a bit of numbness that developed as at some level you can only handle so much before your body just simply starts to shut down emotionally.  Writing this blog in many ways is one of my few outlets as I work through my personal emotions with words.

December has been a little tough as we had a confirmed case of RSV in the house in early December, and guess who it was, of course, Savanna.  While we were worried about complications, she managed to pull through it well.  Austin and Brandon probably had it too, as they were really sick for about 10 days.  Tristan managed to head it off, but did have a few sickly days.  Rebecca and I both got it too, eventually, but it turned out to be pretty light in terms of effect on us.  Savanna had a swallow function study on the 11th, which is where they determine how well she transfers thick and thin fluid from her mouth to her esophagus.  She did great with no signs of aspiration.  We started to push the post-oral feeds and she is doing well.  Then she developed a UTI, and that was really unpleasant for all of us.  Through this, I undoubtedly witnessed seizures with Savanna.  At some level, it was to be expected.  I increased some of her medication, which slowed the downward titration, but managed to keep the seizures at bay.  As of the 19th, everyone is healthy.

Moving forward, Savanna is doing good with her physical therapy and we will be adding speech and occupational therapy in the coming weeks.  We will undergo another LTM/VEEG January 16th so see if she is experiencing any abnormal brain activity or seizures in a 24 hour period.  Once off the Keto diet, which will be early January, she will have an overnight sleep study to make sure she is maintaining oxygen saturation levels.  We will switch from Sabril to a conventional AED (anti-epileptic drug), which she will be on for at least 1 year post operative as a standard protocol.

So here we are, on the cusp of another trip, contemplating the feasibility of traveling with Savanna.  We have enough drugs to manage almost any seizure related situation.  I have called ahead and know where the diagnostic equipment and expertise resides in Louisville.  All indications are that we are headed back to Louisville for Christmas for a few days.

Our heartfelt thanks go out to all of you who express interest enough to read this and follow her journey.  Your thoughts and prayers have not gone unheard, and God is speaking through Savanna.  From our family to yours, we would like to wish you a Merry Christmas.

Best wishes

-dad

(Ken Lininger)

Rebecca’s comments and commentary –

As we look back on the words Dr Zupanc chose, and the candid and the direct manner in which she delivered them, we now realize how fortunate we were to have her deliver these messages to us as directly as she did.  We’ve recounted this story a number of times, and those who love us most have had the immediate reaction to have wanted to protect us from the perceived lack of bedside manner.  It was the hardest thing we’ve ever had to hear.  But, truth was necessary.  It was necessary to prepare us for what lay ahead.  It was necessary and the kindest, gentlest decision that Dr. Z made to let us know that we would face a very tough road, and that if we didn’t cling to and look out for each other and our marriage, that we too could easily be one of the 90%.   Over the number of times Ken & I have looked back on this experience as we have gone through the trials of parenting under these circumstances, I believe we found extra patience, kindness, and support for each other, and I am grateful for her wisdom & candor.

As proud patriots and active fiscal conservatives, it has been interesting to face the challenges of health care costs first hand.  Ken is adamant that he would sell everything we owned before we asked a neighbor or stranger to pay a single cent for our health care.  We are fortunate enough not to require assistance at this time.  Commentary:  It’s not the very poor, or the very wealthy that are crushed by medical expenses in our society, it’s those in the middle, making $50K – $300K / year.  The poor receive better medical care than those of us with the best insurance money can buy.  Those in the middle can truly be crushed.  We have stayed on top of every bill and every insurance submission.  We have been adamant that we pay to the doctors what is contractually fair.  Even with this vigilance from 2 masters degree engineers who have held executive positions with top companies, we have seen a number of threatening letters regarding delinquent account status, as the collection companies & the insurance companies figure it out between each other.  Ultimately, it is straightening itself out, but we wonder what the impact on our credit rating of all these mistakes and poor coordination between the insurance companies and the service providers.  We were able to prepare for this, and we made strategic purchases in advance of this step into financial quicksand, but there should be some way to help the average family who faces this experience.

In our liberal government’s infinite wisdom, President Obama has taken away one of the true benefits to special needs families, by far one of the cruelest tax hikes hidden in Obamacare.  He has reduced the amount of money one can save by using a flexible spending account from $5K to $2500 effective in 2013.  This may not seem like much to many of you, but at a 25% federal tax bracket, that’s the cash equivalent of a $625/year tax increase.  To us now, and many of the families we’ve met through this experience, it means the difference between being able to pay for therapy for their child or respite care for themselves or not.  To reiterate the point, the very poor and well-off won’t be affected by this change, only those in the middle who actually implement the shelter.  This is one of many egregious hikes hidden in Obamacare known by many, talked about by few.  Simply put, President Obama intends to pay for his single largest entitlement plan in the history of entitlements in the history of the world on the backs of the very people he claims to be helping or targeting for this entitlement.  It is without doubt the greatest fleecing of America in her history, and very sad to watch it unfold.

We trust that you will continue to place your votes based on your own personal beliefs, but we’ll make a modest request to you to ask that you please look deeper than the marketing hype when casting your future ballots.  Please challenge our politicians regardless of party to address the root cause of expense, waste, & ineffectiveness in our government, whether the issue is health care, social security, Medicare,  Medicaid, education, immigration or other.  We are the greatest nation on earth, and there are Christian solutions to the problems we must solve together as a nation, if we will only hold our leaders truly accountable for being problem solvers and choosing to advocate & implement real solutions vs. just their marketing, lies, & hatred of the opposite party.

When we addressed the meager amount that our neurosurgeon’s office had settled for, we learned more about the healthcare situation in our country.  He indicated that less than 5% of the children who are candidates for radical life-changing epilepsy surgery like Savanna’s ever even find out that they are candidates.  There are only a hand full of pediatric epileptologists in the country who could have diagnosed a case like Savanna’s properly.  The reason for this is that the real money in medicine goes to other specialties like orthopedics and procedures such as spinal fusion.  The insurance companies base their reimbursement rates on Medicare.  Medicare bases its reimbursement rates on lobbying.  Medical device companies & pharmaceutical companies have much stronger lobbies than the epilepsy foundation.  A surprising statistic that he shared  with us is that 80% of back surgeries are unnecessary, and 60% require a 2nd surgery within 10 years after the 1st.  Yet these surgeons are paid 10X for each back surgery than neurosurgeons are paid for truly life changing surgeries.  That is not to say that no back surgeries offer positive, life-altering results.  But, reimbursement rates should be based on successful outcomes, not lobbying.  The most cost-effective healthcare programs in the world work on this basis.

I don’t share this with you to make you hate or judge big pharma, medical device companies, or Orthopedic surgeons.  We passionately advocate capitalism, and we are so grateful to big pharma that they had the money to invest in the many drugs Savanna has needed and will continue to need.  They will never recover their investment in many of these medicines, yet they continue to develop them at a loss, based on their guiding principles.  I share it with you, because it is facts like this that cause our best & brightest not to choose to go into neurosurgery unless they have a driving personal passion to do so.

I’ll leave you with one final thought.  My prayer during this journey has been simply to our Lord to “carry me” and to carry Ken.  This comes from the depth of my soul as I recount a poem that I read frequently as a little girl.  Many of you are probably familiar with the poem / prayer “footprints”, if not, I’ll recount if for you here:

“One night, a man had a dream.  He dreamed he was walking along the beach with the Lord.  Across the sky flashed scenes from his life.  For each scene, he looked back at the footprints in the sand.  He noticed two sets of footprints, one belonging to him, and the other to the Lord.  When the last scene of his life had flashed before him, he looked back at the footprints in the sand.  He noticed that during the saddest and most challenging times in his life, he saw only one set of footprints.  This really bothered the man, and he questioned the Lord about it.  “Lord, you said that once I decided to follow you, you would walk with me all the way.  I have noticed that during the saddest times of my life, there is only one set of footprints.  I don’t understand why when I needed you most, you would leave me.”  The Lord answered, “My son, my precious child, I love you, and I would never leave you.  During the hardest times of your life when you see only one set of footprints in the sand, it was then that I carried you.”

There have been so many times throughout this journey that I haven’t even known what to pray for.  I have simply prayed, “please carry me God”, and He has.  May He carry you, when you need it.  May He send angels to you to guide you and share your path.  May we not question His purpose, yet continue on this journey supporting each other.

Last year, when Savanna was first diagnosed, my sister in law, Kenia, and my parents gave up their Christmas to come be with us.   Dad went to church, and the priest said something that will always stick with me.  He didn’t say, have a Merry Christmas, he said, have a Blessed Christmas.  That is what we wish for you, a very Blessed Christmas.

To leave this post on a lighter note, Mom, Dad, & Kenia joined me for Christmas Eve service with the boys last year.  As we were leaving, Dad pointed up to the sky and asked Tristan if he thought the bright red light up there was Rudolf’s red nose.  I’ll never forget Tristan studying the sky, then looking back at my Dad, Grandpa Squiz, and candidly saying, “That’s an airplane, you idiot”:)  It was rude, but admittedly hysterical.  Ken broke Savanna out of the hospital on Christmas day and we were together.  My friend Thuy visited us shortly thereafter.  If you don’t know Thuy, she’s not the warm, fuzzy, emotional type, but she’s a true friend.  It’s hard to know what to say to someone like us who had just experienced what we had, but she said, “No matter what, Savanna will be loved.”  It was truly comforting, and she was right.  Savanna will always be loved and she’ll be loved more fiercely, and in a way I never could have imagined before this experience.

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