7 Years Later

Posted on April 2, 2020 by kenlininger

7 years ago today, Rebecca and I acted on a decision, to operate on our child in such a way, that there was no going back. 7 years ago, we said goodbye to our daughter not knowing the outcome. As the day unfolded, it seemed as though we were in a vehicle crashing down the side of a mountain in slow motion. With no control or understanding of when or where we would land. I just wanted the dream to end.

And then, some 14 hours later, the dream had ended. We walked away from the crashing car to a harsh, new reality. We did everything possible to help our child stop seizing. So did the doctors. The aftermath of our decision was upon us. Most want to think this is all roses and fairy tales. Not so for some – for us.

In the PICU, the wake of devastation smashed against us as we floundered trying to help Savanna. Emotions ran high as Savanna struggled to breathe. Tensions mounted as the doctors considered their options. Rebecca yelled at one doctor out of desperation. The doctors seemed embattled about what to do and what not to do. We felt lost. Time got really small.

Looking back, so many images and memories from those days are vivid in my mind – the good and the bad. Time has faded those emotions, but pictures can bring it back in a split second.

Time also provides opportunity to reflect on our overall situation. After all this time, I have found my calling, my purpose, and truly had no idea before this experience. I now realize our participation in God’s design is on purpose. The struggle was deliberate and an opportunity for God to show His grace. God’s plan is for none of us to know ahead of time outside of the fact that if we believe in Jesus, we will one day have eternal salvation. It is up to each one of us to find the real Joy in life – to find our purpose.

That time in the hospital and the difficult recovery that followed has all moved on like sand falling through the hour-glass. And here we are.

7 Years Later.

So what does that look like for Savanna? And, for our family?

Today, Savanna thrives. Savanna is full of life. Today marks 7 years since she had an unprovoked seizure, and about 6 years off medications. Amazing!

Savanna can enjoy life in a way we once only barely dared to hope for. Savanna rides a scooter, and a bike. Savanna can roller skate. Savanna can ride a Hoverboard (I cannot)! Savanna can swim pretty darn well, and she can climb a tree better than most kids twice her age.

All of this awesomeness is not without real challenges. The consequence of removing the left occipital lobe is right sided dense homonymous hemianopia. A bunch of words meaning that she does not see out of the right half of either eye. Weird right? We have learned this plays a large role in education, specifically understanding our language. Savanna does read, but still a few levels lower than the standard for our district’s curriculum. See the reading video below (recorded the day of this post)!

The consequence of removing the temporal and parietal lobes also seems obvious in a lesser way. Savanna has less presence of her right side. Often you will see her trying to write or do something without using her right hand to help. Prompting will bring it into the situation, but it is noticeable. Her fine motor skills seem fairly typical, but when tested by modern metrics, there’s still a clear struggle.

We attended a pediatric epilepsy surgery conference in July of 2019, the only one of its kind in the world. I was a guest speaker during a research meeting prior to the conference. The Seize Hope Fund was a sponsor! Thank you to all who have contributed.

Presenting Savanna’s story was a lot harder than I thought, speaking to a room full of doctors and surgeons – some of whom I had read about many years prior. During the conference we got the opportunity to talk to adults who had similar surgeries as infants and experience them in a public setting. It was truly amazing. We met some amazing families, some for the first time in person having “known” them online for many years. We left realizing there was more that we could and should do to help Savanna despite how well she has been developing.

We made a new connection with a pediatric neuro-ophthalmologist, who has helped us, as we strive to understand and maximize her vision. There are a lot of unknowns here and different schools of thought on how best to foster Savanna’s vision as we navigate these final years of critical development.

We put Savanna through a neuro-psychological evaluation – her first one. This is a comprehensive assessment of a child’s developmental level and psychosocial behavior, with targeted recommendations for interventions and therapies that use her specific strengths to address her weaknesses. Armed with this information, we can better craft a plan that suits her needs. We also have recommendations for what we can do outside of school to help Savanna.

That said, the report is sobering from the sense that when compared to typical kids, she has many areas of very weak performance. For example, processing speed, how quickly Savanna can see something, absorb what she is seeing, have her brain interpret it, formulate a response, and execute that response, was scored in the VERY LOW, category. This puts her IQ measurement in the bottom 5th percentile based on a “typical” test. In some ways, this makes a lot of sense, but in others, it gets thrown out the window, as our Savanna is anything but “typical”. She had a few AVERAGE to ABOVE AVERAGE ratings in some aspects of working memory, as some would agree if you know her. A lot of mixed feelings interpreting these results – but an excellent baseline.

Savanna was diagnosed with ASD (Autism Spectrum Disorder) early in her journey. We honestly thought somehow we had intervened on, and possibly reduced, the ASD through the brain surgeries and 1000s of hours of subsequent therapies. And, we may have. However, the neuro-psych evaluation indicated that ASD is still a very valid diagnosis for her. While disappointed, we cannot deny some of her behaviors and mannerisms. It also indicated some impulsive behaviors consistent with ADHD (Attention Deficit Hyper-activity Disorder), another layer to the challenges.

All of that said, seeing Savanna learn and enjoy life is a blessing from God, and God alone. Yes, we have prayerfully made decisions and tried our best to honor God through this entire journey. In doing so, I talk with families on a regular basis about many aspects of this journey. We also work with an organization called The Brain Recovery Project. Their focus is after the surgery: How to best help these children after the surgery. No one else addresses this in a more comprehensive way. Rebecca and I are proud to support them and represent them.

I leave with a bunch of pictures and videos! Enjoy, and God Bless.

Dad

Shooting a .22 rifle! She loved to do this with Grandpa Ken.

When you watch Savanna with this basketball, you see her challenge from center to her right side.

Yes! Savanna can read!

Luna’s Story: Update #2 – Never. Give. Up.

Posted on March 1, 2016 by kenlininger

A 6-minute video.

How can a 6-minute video video catalyze so much activity?

1:30 into the video I see one process happening in Luna’s brain; the happiness in her eyes melts away while fear and terror are evident as her brain struggles to stop a raging electrical storm.

After a 75 sec complex partial seizure, a separate process is evident: Infantile Spasms which clusters for several minutes.

It is a remarkable video, one that captured her seizure disorder at a very early stage, and before almost all mediation. I am not sure I would have been so insistent Maria continue to seek second opinions after the Norwegian healthcare system more or less gave up on Luna.

If you are unfamiliar with Luna’s story, here is the first post from November 2014. I want to share some of the highlights of her journey in this post.

Nearly 6 months after the onset of Luna’s epilepsy, she received her first 24 hour VEEG. Prior to this, it was only short EEG’s without synchronous video. By this time, courses of steroid and hormone therapy (synthetic ACTH) were tried with some effectiveness, but almost immediate relapse upon completion. Luna was on several conventional anticonvulsants and Sabril.

If they captured the overnight VEEG data before all this intervention, what might be different? Difficult to say, but very interesting to the point of heartbreaking to consider.

MRI impressions were normal and did not correlate with the clinical presentation.

Finally, negative targeted genetic and metabolic testing rendered Luna’s case more or less closed in Norway: etiology unknown.

Take the pills, accept her as she is. She will be disabled, was Maria’s translation of what she was told.

I advised her: Do Not Give Up! I always felt there was hope for Luna.

Why?

Impressions from early EEG tracings found epileptiform discharge activity in both hemispheres, but more in the left hemisphere, and very close to the midline of the brain and almost always with overweight and pre-dominance in the left hemisphere. Often there was bilateral slowing. The slowing was frequently found to a greater extent in the left hemisphere.

To me, the remarkable video was a sign that all the generalized activity could be irrelevant if there was a focus discovered. This theory is difficult to prove given the focal events ceased after the steroid therapy.

An analogy: Imagine if you were spraying water mist or hair spray on your child’s head. And you were standing on their left side spraying towards the head around ear level. As you spray, you move the spray nozzle around, and as you get near the top of their head some of the spray easily falls on the other side of their head. At first, it would be clear that some of the spray from the left side fell on the right side. But if you just never stopped spraying, after a while it is impossible to determine if you sprayed some from the right and some from the left independently, especially if you were brushing the hair during this time.

Maria began looking outside of Norway for help.

Helsinki, Finland has a well-known comprehensive epilepsy treatment facility. Maria engaged the doctors there as did I. Uninterested, they referred her somewhere else in Sweden that was not a good fit for Luna.

2014 began with a trip to Bonn, Germany. The financial cost was high. But, the emotional toll was higher, as once again negative MRI findings ended the investigation despite the presence of a focus in the left hemisphere found in a long-term VEEG.

Dr. Sassen reviewed the early videos and agreed about the focal nature of the episode in the one very remarkable video. Why then did he not recommend more diagnostics?

Luna was weaning steroid therapy during this time and was experiencing seizure control; so no seizures were captured during the VEEG. This lack of clinical seizures was likely to key reason additional diagnostics were not performed.

I remember the defeat in Maria’s words in emails, the misery, and emotional turmoil in the family. Chronic seizure disorders in young children are well-known for disintegrating the family unit. During this period Maria realized she had a marriage built on sand not rock.

By the summer of 2014, Maria was in contact with Dr. Von Allmen and Children’s Memorial Hermann Hospital here in Houston. In parallel, Dr. Simon Harvey from the Royal Children’s Hospital Melbourne, Australia, also reviewed her case.

Dr. Harvey insisted she get a PET scan. In a matter of days, Dr Harvey in Melbourne Australia ordered a PET scan for a child from Norway to be performed at St. Thomas hospital in London, England. You can’t make this up!

The results indicated she should be a good candidate for surgical intervention. Finally, I felt like she broke through an invisible barrier in getting help for Luna.

Where can Luna receive such surgical care?

It wasn’t long before the USA became the only real option and Children’s Memorial Hermann Hospital was the natural selection.

They quoted $125,000.00 for investigation and surgery, far more than anywhere else. But, Luna could get quick access to care here and could not elsewhere.

Maria created a fundraising page through one of the internet-based fundraising sites. The response to Maria’s call for help was dramatic and surprising. God’s plan indeed.

Like every step along Luna’s path, accessing pledged monies wasn’t without significant challenge. Global political tension between the US and Russia made transferring Russian monies difficult with credit cards and wire transfers – the kind of transactions needed in this situation to quickly fund the planned events. Her friends came through with great success!

We don’t know all the donors, but whoever you are, you played a vital role in changed lives. Thank you for your kindness and generosity. Not only did you help change Luna’s life, but you illuminated a potential path for others like Luna.

A pause.

Maria didn’t have the necessary funds CMHH demanded. And, yes, ‘demand’ is the correct word. Global political tensions and resulting monetary policy restrictions delayed the transfer of some pledged funds.

What to do? Make the trip, or wait until she secured the funds?

I remember telling her “Just get here. And, we will figure out the rest.” This was our moment we have been waiting so long to happen.

Despite many setbacks, roadblocks, and barriers, Maria and Luna made it to Houston.

After evaluation and consultation with Dr. Tandon , the chosen path at that time was a TPO resection/disconnection. The hope was that remaining cortex was not implicit in the epilepsy.

A hemispherectomy was discussed as the likely procedure to provide the most control, but also with the most consequence.

The procedure had a remarkable positive effect on Luna, but unfortunately it was clear she needed more help as her epilepsy continued uncontrolled.

Devastated, Maria returned to Norway with Luna to collect her emotions. Here was a post I made just before she departed.

Emotionally knocked down, she stood back up.

Maria reorganized her life and relocated to Houston seeking further care for Luna. She secured a job such that the company paid for the transfer. She leased a house, and a car. And began engaging in all the things that go along with living in the US.

[This person, this Mom, Maria, has a wealth of courage and love in her heart. She used to get tired and say “I have no forces left”. I always chuckled at her word choices, but she did have forces left. She is human yes, but has superhuman ‘forces’ in my book. As I reflect on all she conquered to get real help for Luna, our journey with Savanna pales in comparison.]

American medical insurance in place, a new round of surgical evaluation was initiated. The results were confounding. Discharges still in the [connected] left and right hemispheres. Dr. Von Allmen recommended a larger resection, likely including some motor cortex.

Dr. Tandon wasn’t confident that would help but was willing (as I understand it). He recommended a palliative procedure with the intent being to slowing down the epilepsy progression and perhaps illuminating the focus more clearly, without serious consequences.

The discussion devolved to a point where Maria was left with less than ideal confidence in the plan of care. Dr. Von Allmen, frustrated, referred Luna to another pediatric facility.

Luna’s case I guarantee while perhaps not one-of-a-kind, is extremely unusual in presentation and overall path of care.

Using the MEG study from Houston, the team in Austin (Dr. Clarke and Dr. Lee) went to work. They performed another 24hr VEEG and installed several depth electrodes.

The Austin team ultimately followed a similar path suggested by the epileptologist in Houston, which was a larger resection.

Prior to the surgery, I heard discussion about the ‘incomplete’ or ‘not optimal’ nature of Luna’s first surgery. Parts left connected that ‘were missed’ according to accounts of discussion between the Austin team and Maria. I struggled with the motives of this discussion.

These statements sounded like conjecture, a moment to elevate one’s self without any responsibility. That would soon change once they too operated on Luna.

I think in general Maria felt discussion with the surgeon in Austin was what she needed most. I was not present, but the account of the conversation sounded very positive and reassuring. It sounded extremely specific in what was ‘done incompletely’ previously, his plan to ‘fix it’, and a near guarantee Luna would be ‘seizure free without motor skill loses’. Who wouldn’t want that in this little world, right?

[Luna’s case unfolded such that it appears Dr. Tandon was likely correct in his assessment during the second surgical consultation here in Houston.]

On August 14, 2015, Dr. Lee per his language, ‘completed the TPO disconnection’ in Austin, Texas at Dell Children’s Hospital. Luna is such a strong little girl!

Unfortunately, Luna seizures started again very soon after this surgery. And Luna experienced severe hemiparesis, even 4 months post-op.

A corpus callosotomy (the palliative procedure rejected in Houston) and a VNS was implanted for an extra measure of control during a third surgery shortly after the second one.

After the corpus callosotomy, the seizure presentation was remarkably focal in nature. Only right arm and leg involvement during the events.

This was a big and positive change! And it indicated, the right arm and leg were still connected to the motor cortex to some degree.

[Why the palliative procedure? After all the diagnostics in Norway, Houston and Austin, no one could say for sure that the discharge activity onset was only in the left hemisphere. This procedure could positively determine this with minimal deficits. This procedure can stop or slow the progression of the epilepsy by closing the pathway between the hemispheres. This procedure won’t stop seizures, but it can stop focal seizures from generalizing.]

The fourth round of evaluation revealed what we all prayed for all this time: All discharge activity was localized in the left hemisphere!

Amazing!

Now, it appears complete hemispherectomy is Luna’s best option.

January 29^th, 2016 Luna underwent total left hemispherectomy, during her fourth surgery. This radical surgery enrolls Luna into a very small sorority of patients worldwide.

[Epilepsy surgery timing is a research field all its own. The mantra is ‘the sooner the better’. But a misstep can lead to unintended disastrous consequences.]

What does this mean for Luna – a hemispherectomy? No one really knows.

When you study the situation, the outcome is a spectrum, with underlying etiology being a big factor. Therapy methods and theories are evolving as well.

Medical science can’t tell us why Luna’s left hemisphere produced epilepsy. In this light, Luna, and others, are ahead of science to some degree.

For sure, it means Luna will function with half a brain, unlike you and me.

It also means Luna now can achieve her best ultimate outcome with the greatest chance at living seizure free and possibly medication free.

After 13 months here in the US, Maria is starting a new life. She remarried and is moving to Dubai, UAE with her new husband Roman and plans a return to Norway.

Romans 8:31 “What, then, shall we say in response to these things? If God is for us, who can be against us?”

I cannot lie, I found this time of Maria and Luna’s departure quite emotional. Watching that remarkable video brings me to moment of profound clarity. Where would Luna be today had I or someone else not responded to Maria’s call for help in the summer of 2013?

Thank you Lord for leading me into this family’s life. Thank You Lord for inspiring Maria to post the videos of Luna when she did. Without Your guidance and leadership, all of this would not have happened.

All of this from,

…a 6-minute video.

-Luna’s friend

4 Months Seizure Free and Counting…

Posted on August 1, 2013 by kenlininger

4 months since complete TPO resection. No seizures that we know about.

This is great news. 6 months is the industry bellwether. Seizure freedom 6 months after a surgical treatment to remove a seizure focus, generally indicates an upcoming long Honeymoon period if not permanent cessation of the seizures. Specifically, it means the dysplastic lesion was completely resected.

Savanna’s blog has a new page titled “Savanna’s Story“. I have re-written her story from start to finish. It is not a compilation of the posts. Those of you who have met Savanna along her journey or have known her from the beginning, I invite you to read her entire story here. “Like” it, if you choose.

Also, I have upgraded the “About Savanna” page to an abbreviated timeline of events, with a little commentary at the end.

Thanks for all your prayers, support, and comments,

-ken

Our baby is home….

Posted on April 8, 2013 by kenlininger

Savanna was discharged early Friday morning and we made it home by lunch time. It was so nice to be home, feeling like we were back in the driver’s seat again with her care. Savanna is doing better, but still has a long way to go in terms of recovery. She is in a lot of pain, and the best we have to manage the situation is ibuprofen and Tylenol.

The past few days have been rough trying to manage her pain. It comes and goes. We seem to get good moments all of a sudden, and then as quickly as it became good, it deteriorates into crying and fussiness. She has absolutely no interest in taking a bottle, so we are back to bolus feeds only (through her feeding tube). This is tricky when she is just agitated beyond consolation, and squirming like you would not believe.

I decided to make some adjustments to her medication to see if we could level out her mood without too much sedation. I split her onfi back to TID (tri-daily) versus morning/bedtime only. And I went ahead and started scheduling .5mg of ativan, TID. This has helped tremendously. She is much happier and playful, with a lot less ibuprofen. Once we get completely off the dexamethasone (steroid for her stridor), that will help this situation too.

She used to crawl by doing a bunny hop, versus alternating opposite leg/arm movements and now she is crawling like a normal baby. Albeit not much, but when you see it, it takes your breath away at first.

She is eating, like a horse. She is chewing well. Against normal intuition as a parent, dicing food into incredibly small pieces enables babies to simply swallow food versus chewing. One piece just the wrong way and she chokes or her gag reflex kicks in full force. So, the O/T (occupational therapist) we have recommended giving her larger pieces, so she would not naturally want to swallow the food, but rather naturally realize she has to chew it first. Even if she doesn’t swallow it at first, that’s okay, she is getting over the aversion to having food in her mouth. This has been a long process with Savanna. A process that honestly, we almost didn’t even notice with our other kids – that is how different they are from a developmental standpoint. It is all good.

One step at a time.

These guys are three pees in a pod. They are the best of brothers, and worst of enemies when it is time for ‘warfare’ – aka ‘playing wrestle’.

Tristan, Brandon and Austin are such good helpers. They love to do things for Savanna to help us. Most of the time, it is a good help. Sometimes, like when Brandon wants to spin Savanna on the sensory swing, things get a little out of control. I picture in my mind puke spraying out from Savanna splattering the walls all around her as she spins wildly…. and then… well, I slow down the swing of course. We have yet to see the puke, but I have to admit, she likes to spin.

They just crack me up with their antics and how Tristan (the oldest) can interact so well with Austin, (Savanna’s twin and the youngest). He is so protective and makes sure Brandon does not hit him too hard, or ‘wrestle’ him too hard. They drive me to my wits end, especially when Savanna is having a really difficult time. Then they turn right around and do things that are so touching and so thoughtful.

Sometimes, I have caught myself making parenting mistakes with Tristan (oops! did I say that out loud?) Yes. When my patience is the thinnest, I act my least thoughtful. I am so focused on something going on with Savanna, that I have said things in a voice that was not called for, but was heard. These situations are difficult.

Like seeing a picture you shouldn’t see…you can’t ‘unsee’ it. Once I hurt his feelings, it can take a long time for him to get over it no matter what I do or say.

In the beginning, he (Tristan) would ‘forgive’ (more like forget) pretty quickly, but not now. He is older and smarter. His feelings are genuinely hurt, and most times it goes into the next day.

I am learning as a parent and person in this situation. It is still a work in progress, but this ‘stay-at-home’ situation is far more difficult than I thought it would be when I signed up for it. With that, of course, goes the reward far beyond what I could ever achieve in any company, at any level.

Seeing Savanna learn and progress, knowing that I am big part of that effort, just can’t be explained in words. There are not words that I can put together to characterize the emotions involved, especially since this last surgery.

So, overall, Savanna is progressing and doing well. We are really anxious for the next few months to see what happens. We continue to learn as a family what it takes to care for someone like Savanna. More challenges are forthcoming. Just as I have said before, God is preparing us for the future with the situations of today.

A special thanks goes out to Grandpa Squiz, Grandma Lou, Mama Barbara, and McKenzie and Eric for being there when we really needed help. They allowed us to devote 100% of our time to Savanna during the operation and recovery period in the hospital. Their help was a blessing.

Breathe Eat Poop

Posted on April 4, 2013 by kenlininger

Savanna is three days post-op since her second resection for epilepsy. It is too early to tell about her seizure activity, but we see activity that is very concerning from our perspective. We have been told to give it another 3-4 weeks before sounding the alarm.

Savanna is moving around now, and her demeanor is dominated by discomfort and irritation versus acute pain and rage. This is good.

Still in the hospital, here we sit. Like waiting in the in the airport terminal and the boarding status just keeps getting delayed. Then delayed again. Then delayed again. Ugh! The reasons to continue to keep Savanna in the hospital seem convoluted and mired in bureaucracy. We know our daughter. We understand their genuine concern. But life in the PICU for someone like Savanna (and her family) is corrosive. She is ready to go play, roll around, and be a slightly-delayed toddler. The PICU was supposed to be a pitstop for her for the first 12 hours and then she was to be moved on to a more outpatient facility for monitoring and released 12-24 hours later. What a disaster ensued when we were admitted.

The unexpected respiratory situation confined Savanna to the PICU for 3 days, tipping the balance of the our emotions resulting in a more combative relationship with the staff than one that needed to be harmonious. She was having problems I admit, but looking back, the initial 12 hours of care should have been in the PICU and then Savanna should have been moved to the general floor for care. Maybe some of the nurses/doctors out there who follow this blog can elaborate on what I am saying. Or, maybe I am off base too, and by all means let me have it. Comments are not moderated. But, the PICU staff is used to seeing a certain type of clientele. Being the #1 trauma facility in the region, most patients here are completely different than Savanna (and so are the parents). By day 2 in the PICU, we had scuffled with 3 doctors and 2 nurses. Looking back, I am not sure why it took 2 whole days to get in that much trouble – it could have been accomplished in less time.

The doctor overall in charge (the neurosurgeon) had been called twice in the middle of the night during the first two days too. These unfortunate actions create an environment of ‘us against them’. The heat from the friction generated at times is tremendous. And the sad part is that it didn’t have to be that way. The thought that any one person knows 100% of what a baby like Savanna needs is naive. I say that without callus and arrogance, but rather a humble realization that the above statement includes me (the parent) too. Near the end our crime and punishment in the PICU, I asked the neurosurgeon, “What is required for Savanna to be discharged?” He replied simply “Breathe, Eat, Poop.” He elaborated, but I thought it was a great title for a blog post.

I was ready to take Savanna home now, but I also knew a brief stay in the EMU was more or less required. I tried to wiggle out of it, but the sentence was handed down and time served was not enough punishment. Savanna’s journey continued in the EMU. Luckily, the EMU is like ‘Celebrity Hospital for the Rich and Famous’ when you are there for observation without EEG equipment installed. It can be a desolate place too with little to no activity at night – very unlike the PICU. What is odd though, is just when you think it is safe to pick you nose, you realize you are being watched through the video system. You are reminded by the sound of the discretely placed camera panning and zooming under remote control of the EMU nurses. Haha.

Breathe.

No it is not a call for us as parents to take a deep breath, as though the person holding us underwater decided to let go and allow us to surface. Savanna has to maintain Oxygen saturation level of at least 90% on her own. Savanna is still struggling somewhat with stridor, which is due to the swelling in her upper airway. This is a potential result of being intubated for nearly 12 hours. It is not permanent, and will take some time to dissipate. It has to be remedied or markedly improved for discharge. As of now, the ENT doctor and neurosurgeon are happy with how she is breathing and feel this is not holding her back from moving forward. We checked this box.

Eat.

So, with her right vocal chord not closing all the way, there exists significant risk of aspiration if she were to spit up or vomit. It presents a delicate situation with respect to feeding her given the nausea from the pain medications and anesthesia. If she is enraged and hyperactive due to pain, she could aspirate while feeding. If she is sedated too much, she could aspirate while feeding. Dilemma. The neurosurgeon does not want her sedated post-operative as it could mask presentation and symptoms of complications. But, if she can’t be safe in a crib that looks more like a cage more than a place to sleep, what is the point. His answer is just to try to console her and redirect her pain with magic. We need her to be manageable and not in so much pain. We have four children, I can’t just sit with her for hours at time and try to keep her from being in pain with a little tylenol. There should be some common ground here, and I feel like I am being fought tooth and nail about keeping my daughter healthy while not in a lot of discomfort. And, the weird thing as this was not the case at all after the first surgery. Maybe I am missing something as ‘just the parent’. I don’t feel like an irresponsible parent, though there is some innuendo in the conversations with the different doctors. I have to say it is not appreciated after all we have been through with Savanna.

How does this rant apply to feeding? Okay, so if she really is in pain, it is really difficult to feed her. Bolus feeding is difficult to impossible as well. She has a G-tube, why can’t we just use that you might ask? Savanna does have a peg style g-tube, but not a fundo. So she can still eat normally as the stomach doesn’t have a ‘reverse flow’ limiter – if you will. So even bolus feeds are in question now, which I think is reaching too far in maintain Savanna’s admission. Even during Savanna’s most difficult times, sedated far more than now, she never had a problem with reflux with bolus feeds. But my historical experience as a parent is being ignored for the most part. I know why, but it is still frustrating, especially when I am right.

So, I still have a speech therapist consult scheduled tomorrow to prove I can feed my child safely. Amazing. An empty box that I have to get checked.

Poop.

I wore my lucky ‘poop’ shirt to the hospital and Savanna had an extra dose of miralax this morning. This box is checked, a couple of times over I might add.

Breathe, eat, poop. Breathe, eat, poop. Kind of sounds like a meditation phrase. Let’s go Savanna, find your happy place!

-dad

Recovery from a Second Resection for Focal Cortical Dysplasia: Day One

Posted on April 3, 2013 by kenlininger

Having taken care of Savanna after her first epilepsy surgery, I thought I knew what to expect. I was misled by my own experience about the potential difficulty immediately post-op. My bewilderment is like that of parent who’s first baby sleeps through the night in 3 weeks while child number 2 doesn’t even come close to such behavior.

Savanna was very healthy during the procedure, but it still took nearly 12 hours to complete. The craniotomy (opening in her head) was basically the same as her previous except one small relief cut around the vertex of the incision at the top of her head to allow more access. The neurosurgeon told us that Savanna had significant scaring in the dura underneath the cranial bone which resulted in a longer procedure time than planned. After surgery Savanna was extubated and began to experience difficulty breathing known as stridor (a wheezy, whistle sound when breathing due to constriction). This resulted from her larynx and retinoids below it being very inflamed, which constricted airflow. Imagine trying to run or workout while breathing through a straw only.

Throughout the night she was really agitated as the anesthesia wore off and the stridor kept her from breathing well. Finally, after many doses of sedative and painkilling medicines, she really went downhill – so I thought. I worried about her safety that night one time in particular. Rebecca was right there and even though an RT was working on Savanna, things spiraled out of control – or so we felt. Rebecca ran down the hall to find the critical care Fellow that was managing her case, and forcibly brought them back to the room. I think there were some expletives used, as she too was really scared.

Savanna was in tachnycardia. This can be really scary, but also normal presentation with a very agitated child. For sure, with the stridor, the crying hurt as her throat was sore, and this increased her agitation, which results in more crying. Add the constriction to the windpipe and you have a recipe requiring action. With respiration rates in teens, heart rates in the 220-230 range, and bp north of 130, she was really unhappy. They would administer a mg of morphine and she would settle down for about 10 minutes and then awake as though someone was cutting her leg off with a butter knife. Then they tried something else, same result. Everyone involved was amazed after several doses of versed, morphine, norco, the addition of precedex drip, there was still only minimal control of the situation. Rebecca and I could not have been more relieved that we had clear contact with the doctors overseeing her neurological care. They called the appropriate people in the PICU and we felt (even if it wasn’t the case) this made a difference in her care that night.

Perspective: Most likely, the Attending Physician, Fellows, Residents, Interns, and Nurses had not seen more than a few cases like Savanna’s in their lifetime. And guaranteed, the only thing similar would have been the type of seizure disorder. The etiology and child would likely be very different. Some statistics for those interested in my rant on ‘perspective’ – (based on aged data, but the best I could find)

4,000,000 live births in US according to census bureau.
1:4000-6000 live birth rate for babies diagnosed with Infantile Spasms.
Result: 1000-2000 total babies are born that will be diagnosed with Infantile Spasms, total in the US.
The gender ratio is 60:40, boy:girl == There is only 400 to 800 female babies per year born in the US like Savanna.
There are ~ 22 babies within 1000 square miles of Houston that are born like Savanna each year:
Ratio of 10-county (1000’s sq miles) population versus national population
- 6,100,000 : 350,000,000 = 1.7% x total births = ~68,000 people born in this area
- Factor in 1:5000 average, ~ 13 girls born that will develop IS.
- Factor in 70% symptomatic diagnosis, 9 girls born who will develop like Savanna in Houston area (1000 sq miles) each year.
- There are 2 locations qualified to treat this condition in the Houston area.

Even if you add to the number of children with FCD (focal cortical dysplasia) that did not develop IS (infantile spasms), it is a small number in any given year. So from my perspective, Savanna is very special, even if some of the doctors who care for her don’t see her situation worthy of study when dropped into their lap. I am not suggesting they ‘waste’ a lot of time understanding the her history, but more than a look at her current chart might give some perspective to her situation and our potential knowledge as parents. But nonetheless, I find myself ‘just the dad’, with a perceived ignorant and irrelevant opinion not worthy of anything except keeping to myself. A situation that would seem to warrant 60 seconds of briefing by looking through her most recent neurology clinic output note devolves into one that they are forced to go back and look or face a difficult road. I know other parents out there have felt the same way at times. I can’t understand why the situation has to be so difficult.

The following day, we were assigned a nurse who deemed herself all-knowing as to what Savanna wanted, although she stated the opposite. Her hypocritical actions combined with her statements didn’t sit well with me and we decided not to stand for it. Rebecca took on the confrontational role and initiated a nursing change. This particular day was stressful enough already and we did not need the attitude from the nurses treating us like we have never taken care of kids before or that it was our fault the night shift crew did not do the job just as she would have done it.

So here I am, shortly after the first 24 hours in the PCIU, realizing that my baby is probably going back to the OR in a couple of days to deal with the airway restriction that is hampering her recovery while facing the fact that I am confined to this location against my will. To top off our sour experience, Dr. V arrives around 5pm to check on Savanna. We had never even seen the attending physician that day even though they, ’rounded’ on Savanna. No doctor or nurse even told us what ‘the plan’ was despite several attempts to find out ourselves. Dr V, says she is going to contact the ENT she wants involved, then leaves the room to make the call. Magically, the attending physician comes in to speak with us, and said he had already set up the consult. Ironic. Not sure exactly happened outside the room during those few minutes, but it just seems odd that all that happened within about 10 minutes.

But, here we are, Second Resection in Recovery – Day 1

-dad

Sometimes, Less is More: Less Brain Tissue with Focal Cortical Dysplasia Is More Freedom From Seizures.

Gallery

Posted on April 1, 2013 by kenlininger

This gallery contains 7 photos.

We have been blessed with witnessing a profound new beginning for Savanna after her first resection at 13 months of age. Today, God willing, we are expecting a new child to emerge from the operating room again as she undergoes … Continue reading →

Every Single Aspect of Savanna’s Life Is Better….

Posted on February 14, 2013 by kenlininger

December 22, 2012

All seemed well for a trip with Savanna, so we head off to celebrate Christmas with the majority of our family in Louisville, Kentucky. The drive goes pretty well, and we even went straight through from Houston. The first half of the mileage consumed 3/4 of the total time, as it seemed we stopped at least every hour, for at least fifteen minutes. Someone had a dirty diaper, or a wet diaper, or had to use the restroom, or needed something more to drink – (thus all the bathroom breaks). My regulation as Dad was overridden by Mommy. It was all fun looking back. We arrive at Grandpa and Grandma’s house at around 4 in the morning, and it was really nice to be done driving, after 22 long hours. Everybody seemed healthy, and we made it without any incident with Savanna. Our arsenal of controlled substances and medical gear remained packed! Savanna had already endured a difficult December winning a battle with RSV and a UTI, so we were looking forward to good times.

The next morning we get ready for a short trip across town to visit more family. We got everyone loaded in the 18 degree weather into our Honda Odyssey. We back out of the drive, and put it in drive, and nothing happens. It was similar to when you try to accelerate on ice, only the wheels are not actually spinning. The van doesn’t move. Wait it’s in neutral, uh…, no it’s drive? (Son of a b^%$&! I thought.) Oh wait, then it starts to go, but it is already crystal clear something is seriously wrong. Being a mechanical engineer, all the thoughts of probable cause for our lack of ‘going’, run through my mind. No the car didn’t need some Flomax® (ha ha). With some feathering of the accelerator pedal, the transmission seemed to function a little and we limped along. Not far into the little trip to Mama’s house I knew two things: 1) this is about to be a real pain in the butt given its Friday before Christmas, and 2) regardless of how it unfolds, it will be very, very expensive. After about 5 days, I bathed in the glory of being right, (okay more like drowned in the truth).

We managed to borrow a car from my mother which enabled our journey, but certainly highlighted the value and efficiency of a mini-van such as the Odyssey. When you have a little army of small children, it’s just so much easier to make any trip. We go on about our way, cringing at the fact that we just sold a 2011 Odyssey that was on lease to reduce our monthly expenses, and now here we sat with major problems with a 2006 that we thought would carry us along for the next year or so without major investment. Oh well about that plan, Merry Christmas (and bah humbug!)

December 24th, Christmas Eve

We make it through the really long day of Christmas Eve visiting everyone possible. We made several visits to family, attended a Church service, the Tristan, Brandon, Austin, & Savanna partied like champs, Savanna was laughing and playing, and then at 11pm, Austin vomited every single thing he ate that day (which was a lot apparently), and then some. Gastroenteritis (stomach flu) had struck our family. The next day Austin was a handful, completely uncomfortable as the diarrhea started. We went through about 15 diapers in 4 hours before he seemed to be ’empty’. That night, he continued with the vomiting, and then Savanna started exhibiting the same symptoms. Austin is in the 75-80 percentiles for growth, so we were never worried about him missing some meals. Savanna on the other hand, while physically healthy, these situations just tend to progress abnormally in terms of the overall effect on her body. Since the brain surgery though, she seems to respond much more normally than we are expecting. Despite the unpleasantness of being sick, it has been reassuring to watch her contract, battle and overcome typical sickness with normal response. Literally, I have seen her start to get sick and almost without thought, I am packing a suitcase, thinking about how much of what medicine to pack, etc. This process seems to be a thing of the past, and it is truly a blessing in disguise.

We wondered where he got it, as nobody else was sick when we arrived. Assuming it was Rotavirus, you can think back a day or so before symptoms arrive. For us, it wasn’t difficult to determine a culprit. Here is a great ‘visual’ story. Anyone that has taken a little child into a public restroom (specifically a men’s room) – anywhere – , knows it is such an experience. Our boys want to touch and pick up everything in sight. A urinal is like a new toy, and what is the really cool bright colored thing down inside? Treasure! Must have! Yes sir! A truck stop along a major interstate is the perfect safe harbor for viruses and a great transmission avenue. I am sure he contracted it in one of these places, despite our best efforts to use the facilities without touching much. Incubation period fits perfectly, and the first person affected in our family is currently the worst offender in terms of touching everything he shouldn’t.

(Rebecca) Needless to say, during the third evening in a row that Austin was sick, and the 1^st for Savanna, Ken and I were each holding one of them, nearly dressed back in our Christmas outfits because everything else by that point had been puked on and was in the wash, about 3 in the morning, all we could do was look at each other and bust out laughing. It was a time to either laugh or cry, and at that moment, we chose the high road. Now there was something special about this stomach bug. Usually, stomach bugs last for 24-48 hours at the most, but on Christmas Eve, the headline article on the front page of the “Courier Journal”, Louisville’s local paper, was “ER’s flooded with rare strain of 7-10 day viral gastroenteritis!!!” By this time, we realized that Austin’s stomach bug was in the 72 hour range… We had 2 more kids + ourselves to go and a 16 hour (more like 23 hour) car ride home. Grandma, Grandpa, and Rebecca had already been struck by the virus, and fortunately seemed to shake it off in <24 hours, but we feared that the 4 kids would not be so lucky. We decided that the best thing to do was to plastic wrap the car seats, put garbage bags on the floor, pack towels, and try to push through to drive home praying that we’d arrive without a car full of vomit and 4 miserable kids.(end sidebar)

The most disappointing effect from the illnesses, was that we didn’t feel comfortable trying to schedule more time with more of our family, knowing how this virus is very contagious for some time after symptoms. We spent several days more or less ‘holed-up’ in Grandma’s house. While this Christmas was different, as we weren’t living in the hospital, I had earnest plans to spend time more time with our family this year. Savanna’s situation has changed me personally and this is one area I wanted to work on in terms of personal development for our family. Never again are we going to be so far away from family during times of celebration. Life is just too precious and for many, it is taken for granted. There will always be another Christmas, right? Yeah, hopefully so… But there will never be another for us where we are thousands of miles from our extended family, alone, unless medically necessary.

We decided to head home on the 28th, as Savanna is starting to get worse in terms of not eating, and still vomiting. We are performing basic urinalysis with the chemical strips and are monitoring the specific gravity of urine and watching it rise – meaning she is becoming more dehydrated. We start inject water into her using the G-tube, and she continues to just vomit it up. We are genuinely concerned at this point, and feel the need to be closer to her doctors. We packed the van and while I was really getting nervous about her health (and whether or not the van was going to make it home), we left somewhat nonchalantly.

December 30, 2012, Sunday

An uneventful trip, but a speeding ticket a few hours from home just put the icing on the cake for this trip. Savanna is really in trouble at this point and we can’t manage to keep any of the Ketogenic formula down, as she vomits is up as soon as we bolus feed it. (Yuck!) We spoke with her doctor, and decided we would stop the diet, feed her fluid with electrolytes and glucose which would stop the Keto diet. So we started the Pedialite® fluid, along with others. She seemed a little better the next day, so a trip to the EC was avoided. This was the official end of the Keto diet for Savanna and this was really a good thing. After a couple of days slowly pushing electrolytic fluids, she regained strength and recovered.

January 4, 2013, Friday

At my direction, the medical supply company came to pick up the infusion pump we had been renting. A non-moment in terms of task related activity, but a huge mental rainbow as it marked the end of a difficult period. It meant she could eat on her own, (all P/O – post-oral- feeds) without concern of aspiration. It also meant, it could be difficult to feed her if something goes sideways with her health. Yes, we could get another pump quickly. Yes, we could bolus feed her too but it was still a significant mental moment for Dad. It was quite emotional and difficult to explain why. We have learned to appreciate each small victory.

We decided to use some skymiles from our Amex account to fly in Tristan and Brandon’s previous daycare family Mom and daughter (Irma and Paige) from the 4th to the 7th. Tristan became really close to Irma during our most difficult times in CA with Savanna. Irma was a second mom to Tristan and Brandon, and in many ways, to Rebecca and me as well. Tristan made the connection more than Brandon as he was older. He can often be heard saying he wished he was at Irma’s when things aren’t the best at our house for some reason during the week. He is convinced the money in his piggy bank is enough to buy him an airline ticket back to CA to visit Irma for his birthday. Some of these lessons are difficult… Anyway, it was a great visit and we thank her greatly for giving us some time. She always said she built walls around her so she would not get too attached to the kids as they are with her until school starts, and then she typically doesn’t see them anymore. For some reason, Tristan broke through that wall. We call every now and then and Tristan still has a desire to see her. Rebecca and I were actually able to go out that Saturday night while Irma watched the kids. We danced at a studio operated by someone we knew from many moons ago back. It was a great night. Hopefully, we can figure out how to make it back again in the future. We have mentioned “angels” who have helped us through this journey, and Irma, Paige, and Kevin Fisher have truly been that to us. They haven’t just watched the kids, they have become real family to us too.

January 16, 2013, Saturday

Savanna had an excellent couple of weeks and we learned more about how to help her with her motor development. She smiles regularly and is very engaged with her surroundings. We have been working hard on the transition from laying to sitting up. She sits up well now if you position her, and is getting stronger every day. On January 16, she was admitted to the hospital for an outpatient 23 hour EEG/LTM. This was a monitoring session that will help us to see how she has responded to the surgery. The anticipation of the results was intense. While we thought we would get a couple of moments with the doctor to just go over what they were seeing, it was an outpatient procedure, and the doctors don’t round on those patients. It was very deflating for me, but if there was ever a time when the age old adage applies it is now: sometimes no news is good news.

The next two weeks were filled with joy in the house. It was clear that every single aspect of Savanna’s life is much improved after the surgery. On January 19, Rebecca was feeding Savanna, and managed to get her to eat one and a half containers of baby food. Savanna did not fight it that much, and at times seemed to enjoy it. This was a milestone for her, as it had never happened before, or it had been more than a year since such activity. Later that weekend, Savanna was eating Cheetos and cookies with aggressiveness. It was such a great sight to see. Rebecca was outwardly excited and emotional, while my emotion was a little more inward and guarded though just as strong. We were at our friend’s house, Eric & McKenzie Montague (more angels), and Rebecca jumped up and down more excited than a little kid at Christmas.

January 30, 2013

We were in the middle of our morning workout session on the 30th, and Savanna was really happy and engaged. Then suddenly while I was working with her, it looked like she could sit up on her own. I stood back, and like letting your 4 or 5 year old go on the bike with no training wheels, I let her go. She went from her back to her belly, then to sitting up in many, jerky uncoordinated movements – but she made it! She was so happy with herself, and so was I! The vast majority of children blow through this milestone with little input from the parents or knowledge with respect to the mechanics involved in the movements. It was a really rewarding experience and I felt like all the effort and sacrifice in terms of time not spent with the other kids was paying off. I only wish Rebecca could have been there to see it happen. She did it again later that day during an afternoon workout session. This experience has shown me that most major milestones like this are going to take a lot longer to achieve for Savanna.

January 31, 2013, Thursday

Our Au Pair exchange student, Andrea Ramirez, that was helping with childcare had gone home to Columbia on the 23rd, so I was on my own during the week now. What a change for me personally. Anyway, I had some apprehension about taking all four kids to the doctor appointments, especially the epileptologist, as they tend to require several hours of waiting before you see the doctor. I went for it, as I could not find help that day for the kiddos that I felt was affordable. We arrived early for the epileptologist appointment to get the reading from the EEG. We waited in the waiting room for about 45 minutes and then we are called back to the room. I have a double stroller, plus the two older kids. The exam room became really small, really quick. The wait in the room was two and half hours before we saw the doctor. This is typical in this field of practice. Two hours in, I had run out of all of the food I brought. There were remainders of cheerios, grapes, blueberries, cheetos, and raisins on the floor….multiple cups of water consumed by each kiddo, because ‘Daddy, I’m thirsty’ – and the resulting numerous trips to the bathroom… (public restroom from above again, yes!)

Then finally, the doctor appears. The conversation was swift, as it was clear the majority of the family was completely done with being there in that small room. Savanna had finally given up and fallen asleep in her car seat. Then I got the official news…

Unfortunately, as we suspected, Savanna is still having seizures.

While not a complete shock, it was definitely disappointing and difficult to hear nonetheless. Apparently, a single seizure was recorded during the 23 hour monitor, which was much like the previous ones but clinically so subtle I didn’t notice it as the caregiver in the room with her. The good news is that the onset is right where they thought it might be given the abnormal tissue that was left intact after the first resection.

(Rebecca) While Ken was amazingly managing all 4 kids at the doctor’s office waiting for Savanna’s test results, I was driving home from a 4 day business trip to Louisiana. We were connecting by phone, as I had hoped to hear the Dr’s comments directly. The few actual minutes when a doctor walks in to speak with us can be a whirlwind. So in this instance, I wasn’t able to listen in. Ken and I only talked briefly after he got the news, as he had to let me go to manage the kids. After hanging up, my heart just sank. You try to be realistic despite the emotion involved. When the doctors came in after Savanna’s surgery, and told us they hadn’t been able to remove all of the dysplastic brain area, I remember somehow knowing that this is the path we would eventually go down. But, I had always hoped, like every parent of an epileptic child, never to hear about another seizure. The guilt of being a working parent in this situation, and not being there with Savanna…with Ken…as he received this news is just impossible to describe. (end sidebar)

So now what?

First, review of the expert side opinion.

We knew that abnormal tissue was still present when they closed the first surgery. Savanna had blood-gas saturation levels in the 60%’s at the end of the surgery (not good), lost half of her blood supply, and received a couple of transfusions – so it was time to call that procedure done. We were advised a second surgery is highly probable. When? Well, it is difficult to say. Savanna will tell us when. If her development is progressing well, and there is good seizure control with medication, the operation is on hold indefinitely. This is just as simple as it gets.

Second a review of the non-expert opinion (the mom and dad theory)

The abnormal activity was greatly reduced after the first 2 resections (the first procedure) and we are now seeing a rapidly increasing pace of her development, globally. We could not be happier with her progress and without a doubt every single aspect of her life is better, far better. Could the second surgery be planned proactively? Will it be as difficult leading up to the next surgery as it was with her first? It was hard news to hear that seizures were still present, and there was a moment amidst the craziness that the world seemed silent around me. I didn’t know what to think, how to act, or how not to act, what questions to ask. Questions, we had many, answers we had few. This sounds odd, as one would think I would be comfortable in this situation given the constant exposure. I couldn’t remember what questions Rebecca and I had for the doctor and all I could do was listen and absorb. It was a disappointing performance from a parental perspective as I re-live the visit. Looking back, it was not a good decision to take all the kids with me to the clinic visit. A ‘do-over’ would result in at least the older kiddos to be dropped off somewhere trusted, regardless of the cost. At any rate, nothing changes with her care except the change of AED medicine. (No big deal right? Wait for the next post.)

The new plan…

Our doctor wanted Savanna to start on another AED, and titrate down the Sabril®. We had already started decreasing the Sabril® on our own anyway since she was doing so well and initially on a really high dose. Then it is really a wait, watch and see event as we watch Savanna’s developmental progression. Like she did in the past, she will let us know when the situation needs to be addressed or when she needs help. I only pray that process is not as difficult as the first time around.

I called Rebecca on the way home from there to give her the news and I could tell she was going to cry, and I learned later she did. She had many more questions right away than I did, and I think Savanna would have been better served that day by having Rebecca in the office than me. It was a sinking feeling not having the answers to Rebecca’s questions, but even more so, knowing that I simply didn’t ask them at the time. This would be a good time to be able to use a mulligan. It has resulted in my reflection on my ability as a father and caregiver. Am I really the right one for the job? She is so strong, intelligent, and beautiful.

I meet Rebecca at home with my car load of craziness, and amidst the reunion of mommy and kids after Rebecca’s 4 day trip, Savanna sat up on her own again. This time, Rebecca got to see it, but it was really a bittersweet moment to say the least.

Saturday, February 2, 2013

Savanna is really having a hard weekend. We suspect a UTI, and a basic urinalysis indicates high levels of white and red blood cells in the urine. Classic sign of a UTI (even without presence if high levels of Nitrites), especially since she has been screened for most all other types of abnormalities of the UT. We start a coarse of antibiotics, as we keep those on hand now just for this occasion. The rest of the weekend and majority of the next week is really difficult as the pain seems to be high with this type of infection. Conventional pain medications don’t seem to help, but Uristat® seems to ease some of the pain.

Tuesday, February 5, 2012

Savanna is teething something fierce and really having a hard time. Pain medication is barely affecting her, and then she starts having seizures. My heart sank. I was very concerned with what I was watching. Could teething pain provoke such activity? We already knew she was having seizures, but didn’t really know if pain would trigger such an episode. Administration of Ativan® interrupted the seizure activity. The situation wasn’t emergent, but why let her seize unnecessarily if the trigger was teething pain. We had the drugs, experience with administration, knowledge of side-effects, and the inclination to use them more quickly than not. Somehow, I think knowing the history and the fact that she is our child creates bias – (no way!) Most doctors would probably not have given what I did, but I lost no sleep over my decisions and got reassurance in the decision from the epileptologist later. Rather, I lost a lot of sleep wondering if this was the next step in her journey and it was now ‘go time’ for the next procedure. Was this the beginning of the end of her second honeymoon period? No, not yet… By the weekend, the situation had calmed considerably and I got much needed support from Savanna’s epileptologist. We felt much better about Savanna’s situation, and she returned to being very engaged, happy, and moving forward again with life, a scare, but not a setback.

Some additional commentary: Just when you think it is really bad…

Savanna is under the care of a number of specialists, such as a Pulmonologist, pediatric GI doctor, etc. They usually have clinic days that typically consist of a very short period of only a day or two per week. Just when I think our situation is really difficult, I have one of these specialty clinic visits. The wait times are long, regardless of the type of doctor you are seeing. On the 28^th of January, there we were, waiting around 12:30 for our 1:30 appointment (a little early). Then the procession of other patients starts to arrive as they fill all the exam rooms at 1:30. Most have unimaginable disorders and some have traveled hours to be there. These kids have disorders that render most of them to highly specialized electric wheelchairs or special strollers. Most of these kids have disorders that will end in death long before their parents. (Savanna may still may be in that category.) But, Savanna is so young, that in her car seat, it is difficult to discern the severe nature of her problems just yet. This world, while great if you are healthy, is very cruel if you are not. Sometimes I continue think about why God allows such terrible situations to exist and the answers remain mysterious. The suffering these kids and families endure is amazing when you talk to them first hand and begin to picture what their life is like. I have realized through these clinic visits, that our life and situation isn’t so bad, especially now. Every time I think our situation is ‘so difficult’, I remember what I saw in the waiting room during our last ‘specialty clinic’ visit. Few people I meet in the waiting room of the ‘specialty clinic’ have such an opportunity for relief as Savanna was afforded, and I can say after her first procedure, every single aspect of her life is better.

Happy Valentine’s day,

-Ken and Rebecca

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

Posted on December 19, 2012 by kenlininger

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.

A Day to Give Thanks, to God.

Posted on November 22, 2012 by kenlininger

An update on Savanna’s situation.

She is 4 weeks post-operative, and she is well. We have started to titrate down some of her medications, but she is still on basically the same panel of medications that she was prior to the operation. This is keeping her quite sedated. We are starting to reduce the Onfi first, and see how she responds. Despite the level of sedation, we are happy to report significant changes. The biggest change we have seen is the engagement in her environment. She seems to see her world differently now than she did prior to the surgery. I looked at her over the crib rail one day and she smiled at me without any stimulation or sounds from me. To most of you that may sound silly or trivial to bring up, but for me personally, it was profound. She had never done that before and more importantly, it was a sign that at some level, her brain is working correctly.

She has periods where she tolerates sitting up in a bumbo seat or bouncer or something similar. It is really rewarding to see that type of progress. We still harbor a guarded optimism for her immediate outlook as we know some of the facts. We know that the Sabril could be helping to suppress the Infantile Spasms. Should we lower that dosage and the Spasms return, it would be another fork in the road of her journey to put it nicely. Also we know that if Savanna would not have struggled as much as she did during the surgery, the surgical team would have expanded the resection. While not trying to be an eternal pessimist, it is important that we have some emotional preparation for what the future may hold. Another surgery is quite probable, and a life-long battle with seizures is also quite possible.

Unfortunately, we are still seeing abnormal activity at times. Just last night, she was having a really difficult time sleeping, and I witness about 6 hours of what I would consider a seizure-filled period. I am not positive that what I saw was seizures, but it would appear she has some partial activity still in the background, and it occasionally spikes enough to cause complex or clinical indications. I am certain that a VTM/LTM is in her near future to diagnose what we are witnessing. She has become quite cross-eyed lately and it is asymmetric in nature. What is weird is that the opposite eye is effected than prior to the operation.

We are told she may be experiencing many circumstantial situations as she develops a new baseline. In the mix too is that she is growing, and with infants, things can change fast as we have learned. So, it may be possible she doesn’t reach a baseline for quite some time. We have scheduled clinic visits to see the doctors in the neurosurgery, neurology, ophthalmology, and genetics departments next week. We will send our blood samples to a couple of different labs to sequence her exome and our genome. We are starting therapy again for motor skills, speech, and cognition.

I have included some pictures here that are from the last couple of weeks. She truly is an angel and while we live the myth of Thanksgiving nowadays, we are very thankful this year for what God has given our family. The true story of Thanksgiving has long since been white-washed and papered over with liberal textbooks. It is a day that requires some inward thought about the real story, our past, and the future of our country.

For those of you who might want a closer look at what she underwent 4 weeks ago, there is a hidden link on our website that shows a few pictures from the surgery. [taken down, as of 2-2013] I am not posting the link, to the pictures, just to the website. The link is the homepage picture. It is mobile friendly. Warning: they are graphic.

www.kenandrebecca.com

Have a great Holiday this weekend, and hope this email finds you and your family well.

Mom and Dad

(Ken and Rebecca)

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Tag Archives: epilepsy surgery

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