Our baby is home….

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.

Savanna Hospital Second Resection-6014

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.

Savanna Hospital Second Resection-6094

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.

Savanna Hospital Second Resection-4

Savanna Hospital Second Resection-6070

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.

Savanna Hospital Second Resection-6045

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.

Savanna Hospital Second Resection-6135

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

Gallery

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

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

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

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

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

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

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

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

-ken lininger

The Neurosurgeon Asks: “How bad is it?”

On January 31st, Savanna had a clinic visit related to her 23 hour VEEG performed on January 16/17.  I couldn’t understand at that time why the language seemed so vague about her EEG results.  When I finally got my hands on the EEG report, it became clear.  It wasn’t processed until February 14th.  So, they had to scan the EEG themselves in the office to provide any news on the findings (thus the extra 3 hours of waiting).  Very disappointing, especially, when I learned she didn’t just have one seizure lasting only 30 seconds.  She actually had 4 seizures, none shorter than one minute and one just shy of three minutes.  I was really taken aback at the time and really felt somewhat mislead as to Savanna’s real condition.  But, somewhere deep inside me, I knew the truth.  This time, this day, was coming and it has arrived.

hmmm...  we don't know either....

hmmm… we don’t know either….

I had sent a follow-up email with more questions about Savanna’s care.  I knew all the answers.  Dr. V knew that I knew all the answers, because have been through this in the past.  But, I needed some moral support and reassurance that we were doing the right things with her care.  Dr V was simply too busy to answer such questions and brushed aside the email despite multiple requests for answers.  Instead, we were pushed to perform another MEG study and MRI.  Then we learned her case would be presented in the surgical conference a short week later.  It became clear Dr V was guiding us in the right direction.  During all of this activity, Savanna has been having a really difficult time.  We undoubtedly observed seizure activity.  Some related to teething pain, pain with constipation, and the typical unprovoked seizures during the sleep/wake cycle.  Intervention was necessary on several occasions, though no EC visit was required.

We had reached the target dose on the Trileptal (36mg/kg/day), her new AED.  We titrated the Sabril down and when we were nearly at end of that period (only 20mg/kg/day), she became out of control.  We honestly thought the IS had come back.  Her demeanor according to Rebecca was identical to the time when the IS was in full force prior to the ACTH therapy.  Intervention was necessary, and calls to Dr V were at times frantic.  Panic set aside, we knew what to do, and did what was needed to keep Savanna safe.  Maybe more sedated than she needed to be, but safe from seizures while the time passed.  We have since increased the Sabril back to around 60mg/kg/day and added scheduled Onfi at 15mg/day.  This cocktail seems to be keeping her from pulling her hair out, and us too.

come on dad, no more pictures....

come on dad, no more pictures….

During the surgical conference I get a call from Dr T’s office that they want to see her next week.  “Wow, this is moving fast” I thought to myself.  To get a call during the conference is not the norm.  The final days before we were to have the clinic visit with Dr T were filled with lots of seizures for Savanna, and inconsolable agitation.  Our APRN met us at the clinic visit which also was not normal, so we knew this was serious.  That morning, we got the MEG report which Rebecca and I reviewed on the drive to TMC.  There was a lot of epileptogenic activity, more than we realized.  That particular report didn’t show seizures, but rather, a lot of focal spikes.

We talked with the APRN for quite a while before Dr T came into the exam room.  Then Dr T burst in, greeted us, then just sat down and said “How bad is it?”  Rebecca and I didn’t know how to answer.  We fumbled through a few jumbled sentences, before he stopped us and proceeded to ask us other questions to try to figure out the answer for himself.  The rest of the conversation was about philosophy of the deciding on the surgical option and the procedure itself.  In the end, he explained the procedure plan which is a multiple lobectomy.  The intent was to remove the entire temporal and occipital lobes and the parietal lobe posterior of the motor strip.  It is a much larger resection than she underwent last year.

He proceeded to explain the procedure and what deficits she will have.  Then the conversation turned to more philosophy involved regarding making the decision to operate or not.  There was some pause on my end, but not from Rebecca.  She wanted to move forward and now.  Dr T felt if the Sabril was restarted and Savanna was doing better he would prefer her to be larger in size as she would have less stress during the procedure.  He also felt that there was a high probability that Savanna would have this procedure in the near future, even if we decided to wait now.  We left the visit with a surgery date of April 1, 2013.  Dr T felt we needed to think about the procedure some more and let him know if we still wanted to proceed.  I thought a lot about what he said and the conversation Rebecca and I had that day.  Then I turned to a story I came across from a member of an IS support group on facebook.  The mother’s son, in a slightly different situation to start with, underwent nearly the same procedures.  I read her blog on his story start to finish.  I cried.  The similarities were chilling.  Their son is about 6 months ahead of Savanna in terms of surgical timeline and twice her age.   Then I sat down and wrote an email to our doctors confirming our desire to move forward with the surgery.  I think it really summarizes our feelings, although Rebecca expounds below about what emotions go into a decision like this. While answering the question, Here is what I sent the doctors  (less the grammatical errors I found when transposing the text here):

….

How bad is it?  The first question you asked was the one we least expected, thus the fumbling responses.  Yes, she was crying and fussy for the 15 minutes you saw her.  Until you have lived with a child like Savanna, explanations to your answer are difficult.  Many of us chosen parents attempt to portray this fact/emotion blend through blogs and so forth.  But, until you have lived it as a parent, you cannot understand.   Separating the facts from the emotions is the key to your answer.  You are in a unique position as a highly trained professional dealing with kids like this frequently, and a parent yourself of I presume typical children (my apologies if I am mistaken).  I have given up my career (for the time being) to take care of Savanna.  Rebecca has assumed a role out of necessity that supports our basic requirements financially and from an insurance standpoint.  This role is slowly corroding our life as the job sucks – simply put.  (Yes, we can and will change that, but when you are in the middle of a battle, sometimes strategic decisions have to be made to win the war and that was one of them.)  We moved our family closer to your place of business and our family for her sake.  It has nearly broken us financially, and for sure wrecked our future financial planning.  She is developing, but at a snail’s pace.  And, now complex partial seizures are back and clustering.  Do we have diagnostic proof of the existence of the complex partial seizures, no.  We are willing to run more tests if you need to see more data.  I am using ativan to intervene occasionally and now onfi is scheduled TID.  It was just a personal choice to use ativan versus rectal valium.  You are not hearing about idiotic ER visits now, for several reasons.  Dr Von Allmen is not in France and unreachable.  Now, we are armed with experience, knowledge and access to medications to help her quickly.  It is not because she is not seizing.  Yes, I agree and admit the seizure frequency is lower than prior to the first resection.  But, how bad is it you ask, it is bad.

Yes…we can probably optimize medications to help her with the complex seizure control, but it will be at the expense of becoming non-participatory in life.  We already see that happening now.  We also feel confident this will over time degrade her state of health and make the procedure more difficult for all parties.  And, she is still having lots of electrographic events.  We are ready to act now.  We say that without the benefit of years of experience you have seeing patients like Savanna and knowing that we are making a dramatic decision that cannot be undone later.  We are making the most informed decision we can based on the collected data, opinions expressed by you and Dr. Von Allmen, the stories of other children in similar situations, and our faith in your God given understanding of the science. 

Savanna needs your help sooner rather than later if you feel she can safely withstand the procedure.  You can help her.  We trust you and Dr. Von Allmen, and your team members, to the extent that we are prepared to hand her life over to you for a short while why you all do what you do best knowing the outcome has lifelong effects, some good and some bad, and some risk of unintended permanent effects.  We trust your judgment on the intended procedure plan.  

….

there are no words....

there are no words….

Many of you may wonder (as do we), what will she lose when these sections of her brain are removed?  She will lose her speech, attention to her right side, and short term memory.  Those functions will move to the healthy side of the brain and she will learn to compensate accordingly.  She may have some weakness on her right side, particularly in her right leg.  If it does not go as planned, she may have paralysis on her right side.  This can be overcome with therapy, as it will plasticize to the right hemisphere.  She will lose her vision in the right half of both eyes, resulting in her loss of her natural peripheral vision on her right side.  This will not change, as it is a function that cannot move to the right hemisphere.  She will learn to compensate by scanning her right side every so many seconds.

(Commentary from Rebecca)  We are living now for this opportunity that has given many other parents hope for seizure freedom, and hope for a near-normal life for our daughter.  If successful, Savanna has a 40% chance of becoming seizure free after surgery without long-term medication.  Seizure freedom is what is required to give her the best chance to develop “normally”.  The odds may not sound good, but when we started our journey with infantile spasms (IS), her odds of even having IS, were less than 1 in 10,000.  Her odds of averting severe mental, physical, and emotional handicaps were only in the 5 to 10% range, so to us, 40% sounds very good.  It is “cause for celebration” as our first epileptologist put it.   As a conservative gambler, an engineer, and a statistician, I never thought I’d be one to go “all in” on 40% odds, but today those odds mean everything.

The risks involved in a second surgery are higher than with the first.  Savanna still is barely above the minimum 10 kilograms at which our surgeon will agree to operate.  Our surgical team will also need to navigate the prior resected tissue in her brain which presents it own set of challenges versus virgin tissue.  She could experience too much blood loss.  She could have a stroke during the operation.  The surgical team could have to abandon the surgery prematurely, requiring us to have to wait many more months before a third attempt can be made.  We could lose her.  Most of these risks are very very small according to the surgeon.  It is beyond terrifying to agree to these risks for your child, when they themselves have little say in the matter.  We remain focused on the 40%.

We are trying to balance the risk of moving forward with surgery now, to the risk of waiting too long, and having her lose milestones or go back to the weeks and months of constant seizures and near-coma sedation.  Some days, we watch her, and see how far she’s come since her 1st surgery.  Her hair has grown back, and you don’t notice her scar.  Maybe a few seizures aren’t so bad…She smiles at us.  She loves her brothers.  She’s getting so close to starting to crawl.  She gets excited when we walk in the door…then like so many other times, she’s just not there…  She’s staring off.  Her eyes are rolling, drifting cross-eyed, or pegging in an unnatural direction just for a few moments longer than what can be considered normal.  She goes limp.  Her breathing becomes labored.  Is it a seizure?  Is it just the way her brain and eyes function?  Ok, we think, we just noticed this…how long has it been going on?  Our minds start the mental count 1,2,3,…24,25,26… ok, this is really a seizure…Is it the first one she’s had today, or just the first one we’ve noticed?  We don’t really know.  In the middle of all this, there is life with the other kiddos…

Brandon in the sandbox

Brandon in the sandbox

Saturday morning with powdered donuts!  mmmm!

Saturday morning with powdered donuts! mmmm!

We have to give her this chance.  We pray that we are not selfishly doing it for ourselves, to have a chance to have our normal, healthy baby girl back, a child without lifelong harsh sentence of unknown special needs.  Is it really possible?  How terribly arrogant that sounds as I put my thoughts on paper.  We will love her no matter what, fiercely, and always, but we will do anything and everything within our power to take this burden away from her…away from us…to give her a chance…even a glorious 40% chance…  We pray it is the right decision…(back to Ken)

How bad is it?  Well, it can be worse.  As we have learned, it can always get worse, but we are so fortunate to have this option to hope for.

The Blowout Diaper – and somehow, despite the odds, we managed not to get poop all over us…

So she is doing well prior to March 12th, and not well now.  But, just getting around to this post and in the middle of authoring the next which will go out March 17.

Savanna has presented a number of challenges lately, but few are as familiar to most parents as the ‘blowout diaper’.  Constipation is part of Savanna’s normal panel of challenges which is attributed to several factors. Compounding the problem, she has Hypotonia and hasn’t been very active for more than a year.  Sometimes, she would not have a bowl movement for up to 6 days during the worst periods.  So when it happened, ‘Ho-moly!!!’ as our newly crowned 3 year old Brandon would say.  (He has learned the phrase is really Holy Moly!  but it was funny while it lasted.)  When the momentous moment arrived, usually everyone involved with the event needed new clothes, baths or showers.  Without actually dealing with it first hand, it is difficult to explain.  My experience is that newborns usually do this a few times before they become regular (at least ours did anyway).  But, when she is more than 12 months old, the amount of excrement is significantly greater.  There is a visual for you.  Just so you don’t miss the moment, she would do it about 3 times in a row within 2 hours.  More than a few times, plans changed – even doctor visits were rescheduled due to the collateral damage done by her explosive poops.

He scoots things like the activity table to the counter to reach his goals...

Austin scoots things like the activity table to the counter to reach his goals…

At our new friend's House, Zane, who also has IS

Austin in the doghouse, at our new friend’s House, Zane, who also has IS

Bathtime!

Bathtime!

At the playground in the swing...

At the playground in the swing…

Tristan 5th birthday, these were his gifts.

Tristan 5th birthday, these were his gifts.

at the playground

at the playground

Look! It's a bird! It's a plane! No, it's just daddy trying to take a cool picture...

Look! It’s a bird! It’s a plane! No, it’s just daddy trying to take a cool picture…

Tribute to our doctor, Dr Von Allmen

Tribute to our doctor, Dr. Von Allmen

After the second ‘event’, it was as if a God had spoken and said: “Okay, Okay I have had my laugh.  You can have a break now, carry on then.”   Happiness returned to Savanna and life was good!  And then, we start the process over.  About three days later, the constipation would return.   We double and then quadruple the miralax trying to help her, but it just takes time.  Usually her threshold was about four days and then she was no longer happy no matter what we did, and I don’t blame her.  We tracked it on paper, changing the miralax dose as needed.  We would double dose, then double it again, it just seemed like nothing helped.  The GI doctor felt a stimulant such as a laxative wasn’t prudent, so we were just stuck dealing with this unpleasant cycle.  Looking back, we should have tried the OTC stimulants for adults at a properly reduced dose for her weight.  It may have helped.  The GI doctors see even fewer patients such as Savanna than the epileptologist.  Hindsight is always 20/20 right….?

Part of being a parent of special needs child like Savanna is that you learn that when the brain is not healthy, many autonomous functions of the human body experience some dysfunction.  She is not special from that perspective.  So we roll with the punches, and continue to search for therapies can help her the most.

After her first lobectomy, everything was much improved.  We stopped tracking when she had movements as it seemed she had movements almost every day.   She still had the occasional ‘blowout diaper’, but it was becoming very infrequent.  I didn’t carry extra clothes and car seat covers everywhere we went.  Then her eating really picked up as the solid foods were introduced.  We noticed she seemed to be having pain when she urinated.  All signs pointed to a UTI on numerous occasions.  The most recent one thought had no indication of any pathogen in her urine after a culture as well as a clean stick-dip check.  A couple of abdomen x-rays, and renal ultrasound, and VCUG test later, pointed to constipation.  Apparently, she wasn’t completely emptying her colon when having a normal bowel movement, leaving stool in the colon which can cause pain during urination.  For all of you ladies out there who have had UTI’s, I feel for you.  Our daughter screamed bloody murder when she urinated and it became a scream with other vocalizations that were very, very specific.  We knew right away when she urinated versus falling over on the living room floor (probably from a seizure).

So we find ourselves increasing the miralax dose to help her complete the bowel movement by softening the stool.  And, I now find myself taking extra clothes where ever we go, leaving earlier than normal, and taking the extra car seat cover too.  Ho-Moly!… as Brandon once said.  We are back to the blowout diapers!  She only needs size 4’s but I think today I am going to buy size 6’s and use them when she is due for a movement.

Meeting new friends…

So here we are, living about 2 miles from a family with a child with IS, and did not know it.  We did not connect until after Savanna’s first surgery.  We decided to get together and they invited us to their house for dinner.  It had been almost 30 hours since Savanna’s last movement.  We had given her 30+ grams of miralax.  I knew when it happened it would be significant in nature.  All day we watched for her movement, and nothing.  Time to go to our new friend’s house, and halfway there, there is the smell.  Not just any smell, it is thick, warm, and cannot be mistaken for a simple event – (like a fart – there I said it!)  We arrive, and the first thing our new friends behold, is Rebecca lifting Savanna out of the car seat and liquid poop oozing out of our of her outfit and dripping off onto their floor.  What a great entrance.  We went to work already knowing it ends messy.  Yet somehow despite the odds, we managed not to get poop all over us.  The night went well otherwise, and we now have some new friends for life.

-ken lininger

Savanna Sitting Up and Then In Her Walker

Hi everyone,

A follow-up to the previous post.  Our friend Lisa from California is visiting and Rebecca and her took the kids to Galveston today.  Admist the help in getting them out the door, I ran across some video taken recently in preparing the cameras for an outing.

Taking a break from the deep cleaning, I wanted post this video.  It shows her sitting up and then later that day in her walker.  She isn’t walking yet, but we use it to help her put weight on her legs to start getting her used to it.  These two segments were both captured on Sunday, February 10th.  The last 30 seconds really summarize what it is like in our house right now when Savanna is happy.  Brandon is in rare form!  I watched it a couple of times and just laughed out loud!  A fun memory worthy of sharing.

-Ken

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

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 1st 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 28th 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

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