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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The Honeymoon Period

So a few weeks after the final dose of ACTH, some of the major side effects are dissipating.  She still has a NG-tube in her nose, but no cannula taped to her head as she no longer needs supplemental oxygen.  Her blood pressure is returning to normal even as we titrate her hypertension medication down.  Her mood and disposition are improving, and her awake times are increasingly filled with happiness.  There still exists daily periods of inconsolable crying and fussiness.  I think as we embrace the probability of this activity, it somehow seems easier to manage.  Now that her brain activity is stable, she has started to develop again, and it almost seems like we are starting over at day one, but she is nearly 4 months old.  This good response with dissipating side effects in the world of pediatric epilepsy, is commonly referred to as “The Honeymoon Period”, as it is filled with joy, development, and seizure freedom (or at least good control).

We are struggling with bottle feeding a consultation with the GI doctors results in the decision to install a permanent G-Tube.  She isn’t aspirating, but her suck is weak and she tires quickly which shortens the feeding cycle.  The doctors feel she isn’t getting enough nutrition, and as a result, decide accelerate the procedure timeline.  So, a Monday morning clinic visit transformed into a 3 day hospital stay. The process was multi-staged.  She first had a temporary g-tube installed where the tube was inserted into her stomach through her mouth, and then out the newly created hole to the outside world.  The end of tube in her stomach has a large disc that cannot be pulled through the hole and aids in creating compression in the tissue layers.  This apparatus had a fixed length of tubing that we had to manage with tape.  This was left in place for about 2 months while the tissue fused together fully to create a clean hole directly into her stomach.  At this point, back to the hospital to remove that tube and install the peg style tube we have now.  It is inserted into the hole and then a balloon is inflated on the end of the peg inside her stomach with water through a special port on the device.  It is quite ingenious.  It is low profile, and while still odd to the inexperienced caregiver, very durable and easy to operate.  [Looking back, it was probably the single most helpful prophylactic measure we took for Savanna’s health.  It was great advice from honest doctors, and we were really fortunate to have listened to their council.]  Savanna never liked taking medications orally, so all daily medications go through the g-tube.  her discomfort from the procedure was minimal in the grand scheme of things.  A day or two of pain, but after that, very easy to maintain.

As we entered this Honeymoon period, she continued to respond well to the medications and began to thrive.  There were certain times that were still difficult, but we really needed to take full advantage if these ‘good times’.  She clearly had significant developmental delay that was global in nature, and it was time to start occupational and physical therapy.

So, therapy includes working on gross motor skills such as rolling over, reaching for things, sitting up etc.  She really dislikes ‘tummy time’, and she struggles with putting weight on her arms and legs.  To this day, it is a significant focus of her care.  We also work with her on fine motor skills, such as holding toys in her hands, switching a toy from hand to hand.  Cognitive development is stimulated with texture books, musical toys with lights that require input to function.   While all different, many if these skills are combined when working with her.  In addition, we will have to work on her social skills, language, and feeding.  While safe for her to eat thick baby foods, she has a pretty strong aversion to having those foods in her mouth. 

Seeing her smile at us and begin to follow us with her eyes was the best feeling in the world.  Rolling ever came easily and quickly with our other children, but was a huge milestone for her that we celebrated.  To see her refuse to put weight on her arms and legs is increasingly frustrating.  With each passing day, the real magnitude of her delay and her ability to learn is becoming clear.  Many milestones that Austin, her twin brother, breezes through are major accomplishments for her.  In spite of her challenges, Savanna honestly appeared as though she was experiencing some level of happiness at times, and it was great to witness.

During this time we made big life decisions that included moving the family to Texas, and buying a house.  Rebecca had the ability to make a lateral move within GE,  so we decided I would stay home to raise kids and manage Savanna’s care.  This seemed like the natural progression for our family, but it has been a significant adjustment for both Rebecca and I.  We made the move to Houston mid-June.  [We have looked back a few times with respect to Savanna’s care.  Her case is so complex, that there needed to be a transition period between the neurology teams.  Fortunately, her doctor in CA is genuinely concerned for her well being, and has provided  guidance and leadership through consultation a number of times as Savanna’s condition has changed significantly since moving to TX.]

We are starting to get the house settled and it definitely feels like the right move overall.  Tristan and Brandon are enrolled in a faith-based preschool program that allows me a couple of hours a day to focus on all aspects of Savanna’s care.  They met new friends and are really enjoying our new home and nearby lake.  Austin has just taken off with his development.  He is right there with the big boys throughout the day and is on the cusp of walking.  The boys truly are a joy and really help keep the keel of our ship even.  So, we knew we were going to make a big trip back to CA for David and Brittany’s wedding.  Not knowing who Savanna’s Epileptologist would be in TX or if we might experience a lapse in care, we had scheduled a routine 36 hour video EEG at CHOC where we have already spent so much time.

So, we knew we were going to make a big trip back to CA for David and Brittany’s wedding.  Not knowing who Savanna’s Epileptologist would be in TX, or if we might experience a lapse in care, we had scheduled a routine 36 hour video EEG at CHOC, where we have already spent so many hours.  We were really looking forward to that, as we would also get to consult with our Epileptologist about our current situation in TX.  So we were excited on all fronts to make the trip.  After all the preparations, Rebecca arrives home from a short shipping spree at the dollar store with the boys after school,  and we are off.  It is a long, long drive to CA from Houston, and this is where Savanna’s journey takes a somewhat unexpected left turn.

We arrive in CA, and on the first evening unfortunately witness Savanna have a seizure.  We both say it and knew right away what we saw.  We saw both eyes deviate to the left and complete loss of tone.  It escalated rapidly, and she began to have cluster episodes over the coming days.  Fortunately, we had the 36-hour VEEG test scheduled so we did not have to penetrate the thick membrane in the bowel of the hospital to receive appropriate care (otherwise known as the emergency room/center).  We were warned that this would probably happen to Savanna, but what transpired after that day no parent can plan for emotionally.  It was devastating.  We both knew what the future could bring for Savanna and often wondered what path’s she will take on her journey.  Not knowing when her situation was going to change, keeps us in a constant state of heightened awareness, and it is exhausting.  Apparently, the time for some change is now.  As we drove to the hospital together August 16th, the moment was somber and old emotions about our new situation were bubbling up from many moons ago.  Even though the words weren’t spoken, we both knew ‘the Honeymoon was over’.

-Dad

 

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(Ken Lininger)

Life on ACTH therapy and Vigabatrin for Infantile Spasms

Savanna had been on the ACTH for about 8 days when she experienced her last Infantile spasm.  When she did not have a cluster on December 28th, we were beside ourselves and honestly didn’t know what to think.  She was healed, right?  Wrong.  A routine EEG would confirm lack of hypsarrythmia, lack of discontinuity, presence of normal sleep patterns, but also some abnormalities.  Savanna was still experiencing some clinical events typically effecting her eyes and head.  Even though we were just reaching the highest dose of the ACTH, it was decided that its affect on Savanna (the good part anyway) was at or near maximum.  She was started on Sabril (Vigabatrin) January 1, 2012.  That was the second front-line medication intended to treat the Infantile Spasms.

Within a couple of weeks of the start of ACTH, Savanna had lost most milestones she had reached as a result of the seizure activity.  She stopped smiling and laughing.  She was considered low tone clinically.  She slept the majority of the day, only awake about a half hour out of every four hours.  At least half of that time, she was really fussy.  She appeared to be blind, as she did not track anything with her eyes, and never seemed to be ‘looking’ at anything – just blankly starring. We were told her pupils were normal, and the problem with her vision was her brain.  It was a very dark period for us as a family.  Trying to understand why God allows such suffering was a recurring thought in my mind. 

By the middle of January, Savanna was about half way through the ACTH therapy when her health turned for the worse.  We noticed she was having an increasingly difficult time feeding.  She had now lost command of the breathe/swallow muscle control and was aspirating feeds into her lungs.  She had grown enormously in her face and legs.  Her cheeks were the widest part of her face.  Her hair had turned wiry and was growing fast.  She began to grow facial hair.  One day I came home from work and sat down to give her a bottle, which was our normal routine, and she didn’t  take the feeding as she seemed really congested.   She was coughing a lot and seemed almost like she was choking.  I administered a dose of inhaled albuterol, and it seemed to make the problem worse.  I opened her outfit to look at her respiration rate and was shocked to see her belly contracting inward so hard.  (This in the end, was the result of chronic and increasing aspiration of feeds combined with her inability to adequately clear the fluid due to her low tone.)  She was in respiratory distress and we had act quickly.  I hastily packed a bag, and took off for the children’s hospital.   

Once there, it did take some time to penetrate the membrane that surrounds the ER and in-patient facility.  Triage took all of 15 seconds as the nurse listened to her and said she was in real trouble.  I was told I would be taken back very soon, despite the overflowing waiting room.  An excruciating 45 minutes later, the calm before the storm was over.  I walked quietly through the doors to meet doctors, nurses, technicians into what seemed like utter chaos.  More or less dismissed as an important person in her care, I finally met the doctor orchestrating this effort involving at least 20 people, and I could see the genuine concern for her well being in his eyes.  Within a few hours, she was admitted to the children’s hospital where the gravity of the situation became more clear.  Her respiration rate was steady in the high 80’s, and she could not stay saturated without a strong flow of oxygen.  What became the next 18 days, was a very difficult experience as a parent.  Getting a successful IV started was in and of itself a significant event, as what normally takes a couple of people a couple minutes, took teams of PICU and NICI nurses hours.  It was painful to watch.  

In and out of the PICU, the helpless feeling was ever present. The doctors seemed to have few options left as the treatment eventually became a wait and see event, (of course with a plethora of drugs being administered around the clock).  Depending on which doctor you spoke with, the consolidation in her lungs was probably bacterial pneumonia according to some, and viral pneumonia according to others.  She was given 3 different strong antibiotics, a lung drying agent, and stronger blood pressure medication.  She contracted a fungal infection so bad on her rear, that the Infectious Disease team became involved.  We lived at the hospital, and it was a real strain as we each tried to maintain a presence at home and in our workplaces.  Being ‘fun’ for the other kids was very difficult after a night at the hospital and then a day at work.  Rebecca and I barely saw each other for 3 weeks and the strain on the marriage was significant.  More than once I found myself in that dark hospital room late at night with tears in my eyes trying to grasp the magnitude of the overall situation.  I found myself weak in the face of some of the adversity in front of me.  The effects of those 3 weeks permanently changed my perspective on certain aspects of human existence. 

As if it wasn’t difficult enough… I remember getting a call one day near the end of this particular ordeal at about 8 am from my boss.  He was wondering where I was and when I  was coming in to work, as though I had slept through my alarm.  I had just dropped the big kids off at daycare after Rebecca and I made the early morning switch at the hospital and I knew at that moment something had to change in our lives. While I was working a lot overnight remotely from the hospital, it went mostly unseen.  It did not replace my presence in the facility.  I remember that phone call feeling very cold and inconsiderate.  Over time though, I gained an understanding of  the other side of the relationship.  Once this happens to your family, you experience a paradigm shift while those around you do not as normal life does go on for everyone else.  Recognition and acceptance of this fact is critical in order to move forward.  Your perspective changes (along with your circle of friends) over time.  You see things around you that you may not have ever seen before.  You see other families with special needs kids living life at times, and this becomes an area of interest rather than something you ‘look through’ when observing from afar.  This is an evolving process and we are still learning as Savanna is changing.

Savanna finally went home in early February with oxygen tanks, a pulse-ox monitor, a nasal-gastro-intestinal tube installed, a feeding pump, and a significant panel of medications. The day before she went home, I was with her, and witnessed a smile and almost laugh that we had never seen before.  I captured it on my phone and will never forget it.  The feeling was like your first breath after being underwater too long.  It was a glimmer of hope for us. The next few days saw the final ACTH injection and numerous medications discontinued.  While the side effects from the ACTH were present for months afterward, her neurological progress was remarkable. 

Looking back, we initially had to manage a situation that was very task oriented while coming to grips with reality.  We had not yet started any occupational therapy or physical therapy, so the magnitude of her global developmental delay was still somewhat hidden.  We were being prepared emotionally (and didn’t know it), as the trivial tasks such as medicine compounding and delivery would transform into learning how to be Savanna’s best therapist.  At first I found this more difficult, but now find it very rewarding.

Dad
(Ken Lininger)

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Parenting Redefined – 4 under 4, then Infantile Spasms

As my wife Rebecca walked through the door to my office unannounced, I knew big news was forthcoming.  We wanted to have more children, but with Tristan a month away from being 3 and Brandon around 6 months old, we were just starting to find our way again.  There before me was my beautiful wife not speaking and showing me the ultrasound picture, unmistakably showing 2 embryo sacks.  Holy $!^t! was my response, probably somewhat inappropriate looking back.  Yes, I was happy, elated even.  With the reality not yet absorbed, I was already thinking of the unique moments of them growing up together and all the fun times awaiting our family.  The months leading up to their birth were filled with anticipation and wonderment.  Once we learned the genders, our family appeared complete.  Rebecca really wanted a girl (and I did too) and was really looking forward to all those great Mommy-daughter experiences.  I was so happy for her as the boys and I, in a way, had started to overtake the house with sports, wrestling, fishing, and auto racing – most of which Rebecca has little genuine interest.

Her pregnancy went great and she carried those two little babies to almost full-term.  One day after dinner, Rebecca said “It’s time”.  Just like that, we left the house and arrived at Saddleback Hospital in Laguna Hills at around 6 pm.  By 8:45 pm, we were the parents of 2 more little babies.  Savanna had a little more trouble breathing than Austin did initially, but eventually scored 9/9 on the Apgard scale – same as Austin.  While accustomed to infants, this was surreal.  Rebecca and I had always tried to give each other space on the weekends by taking the kids to do something while the other one had the house or at least the time to do what they wanted (or needed in most cases).  I remember thinking, “How am I going to go anywhere with 4 kids, (3, 1, and 2 newborns)?” Up till now, the situation was manageable, but this was a game changer.  We came home from the hospital on a Friday, and I remember taking everyone to church on that Sunday with Rebecca’s Mom so Rebecca could get some rest.  Since then, outings with all four kids by myself while requiring some forethought, has become manageable.

Late 2011….

Rebecca was able to stay home on maternity leave and the twins were developing fast and normally.  (Looking back, it was a blessing because IS – Infantile Spasms – can easily be misdiagnosed initially.  Had the diagnosis been missed for some time, the result would be reducing the efficacy of the first treatment she received.)  After about 6 weeks, Rebecca started to say things like, “She is still so googly-eyed and he is not.”  I, like many, dismissed her statements thinking she is comparing them to the nth degree already.  Then she said Savanna was having these ‘episodes’ and she wanted me to witness one.  She said she was going to try to catch one on camera.  As we were discussing it that Wednesday night, Savanna experienced one of those episodes right in my arms.  At first I didn’t panic, but I remember not sleeping well that night, as something was clearly very wrong with her.  All of my stereotypical knowledge of Epilepsy and seizures was minimal.  That fact that I didn’t even know seizures occurred in infants indicated the level of my knowledge deficit in that area.  Thursday came and went, and Friday Rebecca took her to the pediatrician.  Savanna experienced an episode in the office that he witnessed.  Up until that moment, the pediatrician was more or less marginalizing Rebecca’s concerns and planned no investigative action.  After those moments though, Rebecca was on her the way to the Emergency Room at CHOC (Children’s Hospital of Orange County) with Savanna.  I meet her at the ER – Emergency Room –  straight from work and I will never forget the series of events that followed.

The next 8 hours was spent in the ER running tests looking for something that might be provoking the seizures.  The law enforcement officer hovering around us really made us feel like we were under the spotlight as the cause for her seizures (shaken baby syndrome).  Savanna was admitted to the hospital as an inpatient.  She had a CAT scan, an enormous amount of blood tests scanning for many types of infections and blood borne disease’s, a sophisticated lumbar puncture to test for a large panel of metabolic and genetic disorders, an MRI, and finally a video EEG.  After about 30 hours on the EEG, a pediatric epileptologist visited our room Sunday evening.  Infantile Spasms was already floating around in conversations, but she confirmed the diagnosis.  Because we had done a little research on epilepsy in children, the news was just crushing.  Even though we were in denial at some level, both of our lives changed in that instant.

Savanna had hypsarrhythmia, discontinuity, and no normal sleep patterns in her EEG.  The doctor’s words specifically: “You need to mourn the loss of your normal child.”  Our minds raced forward wondering about the future and the thought process swung from as simple as wondering how she would do in school to wondering if she could die from one of these seizures.  Looking back, honestly we didn’t know what to think.  It was overwhelming.  Savanna started on ACTH on December 19th.

At this point, Savanna turned 3 months old.

-Dad