Milestones: Savanna progresses while Daddy falls over the hill…

Posted on May 2, 2013 by kenlininger

32 long days since Savanna’s elective multilobar resection. What can I report? Well, it has been really difficult, but I think she may have finally turned a corner with all the crying and pain. And, it probably had more to do with two of four incisor teeth finally breaking through the gum line. One thing I have learned is that life’s normal challenges for young children are just that much harder for Savanna. Unfortunately, she doesn’t know any other way. Just before the grandparents left, we were able to get a few good pictures where she wasn’t sleeping and wasn’t crying.

Grandma Lou and Savanna

Mama Barbara and Savanna

I have come to realize that these periods are core training for parenting special needs kids. It is a bit like that darn underwater board in Super Mario Bro’s Wii, (…need some special thumb exercises or something). It is really difficult, but necessary to master (or at least pass) in order to progress through the game. With faith in God, living through these periods and not losing your sanity is actually possible. And, in turn, it helps me see the happy times more clearly and not to be so callus in social situations. Otherwise, I would probably go bonkers with typical conversation with people around me at any given time. We did document the good times when they happened and here are some pictures of the kids doing fun kid things. Tristan and Brandon are two pees in a pod and they do everything together.

Tristan and Brandon being silly at lunch.

Tristan in 'Time Out', Austin thought it was cool and wanted to join in.

Tristan in ‘Time Out’. Then Austin thought it was cool and wanted to join in. I couldn’t help but laugh, and that didn’t help the ‘time out’ situation, as Tristan knew what was going on – head down and laughing at me laughing at the them…. lol.

Play time after a bath with twin brother. Austin and Savanna.

Back yard fun with a planter box on a Saturday

Savanna in a moment of happiness, with Mommy.

Pre-school and then playing at the splash pad all afternoon is tiring. This is 6:15 at night, and Brandon falls asleep at the table.

Warning: yucky image forthcoming. One morning Savanna was having a particularly difficult time. She cried and fussed for about 5 hours straight starting at about 5 am. At 10 am, I decided to just buckler her into a car seat on the sensory platform swing I built and let her swing. She was worn out from all the fighting. She got quiet. I left her to deal with some laundry. I was at the putting away stage with about 4 loads, so I grabbed what I could and walked back to put it away. The smell hit me like a wall. It was obvious what had happened and who did it. She wasn’t just quiet but laughing. I already knew I had a big mess to clean up, but I was still amazed at what I saw when I turned the swing around to see her. Savanna was happy and laughing and I realized this was worthy of a photo. It pretty much speaks for itself.

Savanna happy about poop in swing

As Savanna navigates this unpredictable sea of difficulty, Daddy turned 40 this month. Yes, I feel older. No, I can longer just decide to do the P90-X Plyometrics workout at will and expect to make it through even half of the routine. No longer can I just decide to go run a few miles, with or without the kids in the stroller. Yes, I have a lot more grey hair – but no need for ‘Just for Men’ yet. Yes, I have another hernia in need of surgical repair. But, there is good news: I don’t need the little blue pills yet! The kids and mommy felt it necessary to make a cake and actually put 40 candles on it. Nice.

During all of this discomfort, Savanna has made strides in development. This has a somewhat calming effect for me, as I know this would not be happening if seizure activity was occurring in the manner it was prior to surgery. Right now, we have to stay focused on that fact. We have obtained the compression vest to help her with the awareness of herself as she moves around. It is like a custom wet suit that is adjustable in terms of tightness of fit. Savanna now has custom AFO’s (ankle-foot orthotic) that helps prevent hyper-extension of her knees when she stands. She is much more responsive when she sees you in the room and when you call her name. This is really a feel-good reaction from Savanna that both mommy and daddy needed to see finally after this surgery. It could not feel better when while not looking at you, you call her name, she turns to locate you, makes eye contact, smiles, and proceeds to crawls toward you and going to tall kneeling with her arms out and up to hold you. For some reason, I never thought that was actually going to happen with her. Then comes the inconsolable crying and fussing. Her movements and behavior when you hold her sometimes is like trying to hold a 25 lb mealworm. She is just everywhere, every which way, and really low tone at times.

Savanna decked out with a compression vest, AFO’s, and a medical walker.

She is crawling all over the house now. This is amazing to see, and is causing me to have to put things up off the floor in area’s she never bothered to explore or care about. She has climbed 2 steps unassisted (…and then… fell backward as I knew she would, so I caught her before she landed on her head. “Good daddy, good!” as Brandon says.)

She is standing now on her own with the help of furniture – meaning she can transition from sitting to standing on her own. This is a milestone for sure. I have attached a video showing her standing on her own. For me it was breathtaking while also very rewarding. This particular clip was about 5 am, and I heard her active in her room. Austin (her twin) was still asleep, so I flipped the light on to capture this sequence. Because of her visual field cut, I don’t think she saw me until I said something.

Going from laying down to sitting up, to standing up, all have their mechanics of motion. And those mechanics are broken down in movements or elements. The training includes correctly positioning the correct limb, at the correct time, with proper weight transfer, etc., etc. Learning to dance is similar when you really break down the movements. We have to teach Savanna each element and how to put together the movements to accomplish the overall goal, sitting up, standing up, walking, etc. It is amazing how normal kids just do it naturally and without any trained guidance. It is a good outward expression of how Savanna’s brain is different from a normal brain. Learning other skills require a similar approach.

Speaking of normal kids, we have been able to witness some normal twin activity that was never really seen in our house in the past. It has been great to witness even if it only lasts a minute or two. Austin sometimes mimics Savanna’s bunny hop crawl, and she gets the biggest charge out of that. Wish I had some video of one of those moments to share, but it starts and stops very abruptly and I just haven’t been quick enough on the draw to record it yet. Here are a couple of pictures of a rare during the day bath time for just the twins while the big boys were at school.

Austin, close up…

In the tub fun, without the big kids. A rare moment worthy of a photograph for memory.

She really likes tilting her head toward the resected side, and actually putting it on toys and such. She continues to do this a lot and we are not sure how to interpret this activity, especially when she is usually so happy when she does it. She also is increasingly insistent on banging her head against walls, mirrors, floors, table legs, etc. She does it repetitively, so she will crawl over to a door with a low glass panel, move to tall kneeling, and just start bumping her head against the window. It progresses to the point I feel the need to intervene. I think this may be sensory related, but are not sure. A protective helmet is on order as she is getting really aggressive with this activity.

Since her second surgery, Savanna gets pleasure from putting her head/ear on whatever is around her.

Unfortunately, Savanna is still battling something in her throat – or at least I think she is anyway. She makes funny sounds when she is sleeping, kind of whistle-like. When she gets really worked up, she has significant retraction in her throat. Her swallow sound is really labored and noisy. It is almost like when you have a really sore throat, and all seems well, then you swallow – ouch. A swallow function study recently indicated Savanna is in fact aspirating thin liquids, what a surprise. I had already ordered the infusion pump as a last resort option, and had been bolus feeding her through the G-Tube since surgery because my daddy instinct indicated she was having problems. Plus she refused to suck after the second surgery and that to date has not changed. So bottle feeding is over and done with for her. She has a follow-up scheduled with her ENT soon that will shed light on the situation I hope.

She is otherwise very healthy and just generally really unhappy about half of her awake time. It is somewhat concerning for us as parents, and we are really hoping her situation is just circumstantial regarding her teeth. We have already asked for guidance once from her doctors. Thus far, I think this just may be the way it is for some time yet. I noticed during the swallow function study that her 2 year molars are right there too. (This is a study done with x-ray ‘always on’, so there is plenty of time to see a lot of things in her head.) I don’t see bulges on her gum in those areas, but the teeth are right there. So, this could be a long six months or so. God watch over her.

-dad

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

Posted on March 19, 2013 by kenlininger

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

Posted on March 15, 2013 by kenlininger

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…

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

Bathtime!

At the playground in the swing…

Tristan 5th birthday, these were his gifts.

at the playground

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

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

Posted on February 16, 2013 by kenlininger

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.

Video

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….

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.

Complex Partial Seizures – The New Normal

Posted on September 22, 2012 by kenlininger

August 16th, 2012. As I walked into CHOC (Children’s Hospital of Orange county) carrying Savanna, there was a calming familiarity. Recognized by the admissions staff and 5th floor staff, it felt like a homecoming of sorts. This was supposed to be a periodic monitoring with expectations of nothing new. Once you mention she is probably having seizures of some kind the tone of the conversation changes quickly. Most of the nurses and tech’s we knew didn’t realize we had made the move to Texas already, so conversation about the move helped lightened the tone.

Once the EEG equipment was in place, it was a waiting game. With infrequent seizures, this time can really pass slowly as her aggravation with the head-wrap grows. There is little I can do, and I have to stay sharp to catch her seizure when they occur. My indication of abnormal activity helps queue the technicians monitoring her EEG output more closely during those episodes. She had a couple of events throughout the afternoon, but then at 1:15 am Friday morning, she had a cluster episode. Consultation with doctor later that day confirmed our fears. The EEG indicated the seizure originated from the left posterior temporal lobe, which is where she has always had abnormal activity. This was a new seizure type though, so the first step was to try to control the seizures with medications. She needed to be stable before traveling back to Texas, and I was planning to drive back with her and the family in two days. What came next was significant period of learning as a caregiver and parent.

Savanna was ‘loaded’ with Phenobarbital around 4pm Friday as a first attempt to arrest the seizures. Not sure why they use the term ‘load’, as the loading dose is no different than the next dose which is called maintenance, even if on a titration schedule. Anyway, she slept almost immediately with initial load via iv. She slept for nearly 7 hours and then awoke completely altered. Her hysteria and rage was something I had never seen before in person. As a parent you see pain from emergency procedures (broken bones, sutchers, etc.), you see the ‘breakdowns’ of toddlers, colic of infants, but this was different. The next four hours I had to manage a possessed child. Finally, she gave up the fight and went to sleep. I was exhausted and emotionally distraught. I didn’t know what to think. Was this the new normal?

After her first maintenance dose of phenobarbital, her anger subsided to extreme fussiness (yes, extreme fussiness was better than before), and then she just seemed to become absent to me. I had a final discussion with the doctor about her disposition, and took away from the conversation that her extreme fussiness may or may not be the drugs. The reality set in that this could be the progression of her disorder in her brain. As she grows, the situation can change quickly with regard to her brain. Her doctor felt she was safe to travel, so she was discharged just in time to attend Rebecca’s brothers wedding reception.

It was very refreshing being around family, but 50 hours straight in the epilepsy unit as a lone parent of a sick child requires some decompression before re-entering society. Not having that, I felt somewhat out of touch with what was going on around me. There can be a general lack of concern for rules. Disciplining my kids for bad behavior is more difficult during these first few hours outside the hospital environment. I felt detached from the situation and the one focus of my last 50 hours was now taken from me and being passed around. I watched my daughter go from person to person, and I could see how far away she was her in disposition. All I wanted do was hold her and I didn’t need anyone else to do it, but I didn’t want to take that time away from the other family that was there either as they don’t get to see her often. We were warned that her seizures could start again, which really put me on the edge. As a parent, you try to be positive and behave maturely about the situation, but when she was out of my sight for more than a few minutes that night, I found myself nervous.

We finished up that night early, and were able to get her settled back at the rented house in Long Beach. We spent some time in the hot tub, and I remember familiar thoughts from months past. I remember being almost comatose mentally after the time in the hospital and then being ‘on’ for the other kids for several hours. It just takes time process the information after you leave the hospital. I awoke the next morning to the first ‘daddy, can I have…’ Rebecca had already boarded a plane to get home early to prepare for work. I packed the van and tried to get going quickly. After a few hours, I had to laugh. El Paso by nightfall was out of the question given our late start, so Phoenix was the new way point.

That evening in Phoenix, Savanna seizures returned. Still inexperienced at dealing with this, my heart just sinks and then a sense of urgency overcame me. I didn’t know what to do. It was like I got hit with a sucker punch. I called Rebecca, and I could hear her concern as she felt a million miles away and helpless. We were both calling the on-call neurologists in CA and TX trying to get someone to help us. Finally, I worked though my options with the on-call neurologist with the new team in Texas. We decided to increase the Phenobarbital, then monitor her condition. Savanna was really cranky that night and neither of us slept well. We got on the road the next morning to El Paso and the seizures started again. More consultation that evening in with the neurologists left me in a real predicament. The phenobarbital dose was maximized, even for in-patient care. Savanna was heavily sedated, but still having seizures. With no diastat on-hand, it was risky making the trip from El Paso to Houston. I decided to try to make to Houston as my options in El Paso were very limited with the family in tow. I investigated pharmacies on the way that had diastat in stock and made note of their phone numbers and locations. The next morning was nerve racking. Quickly through a continental breakfast and on the road, right? Right. Has anyone tried to get a 2 or 4 year old to eat a good breakfast quickly? After a big mess and multiple times to the bathroom to make ‘pooh-pooh in the potty’, I packed in the van and we finally started to haul a$$. Through the city stretches were painstakingly slow, and we had to stop at least a few times totally almost 2 hours. Once on the open road in Texas, it was a different story. The manual for the Yakima roof box indicated not to exceed 70mph, but I can say with confidence, it is qualified for a much higher amount. 750 miles and less than 10 hours of driving later we met Rebecca near our house to transition Savanna and I to another car as we planned to continue straight downtown to Memorial Herman EC.

[Sidebar: Yes, she was having seizures. But, we had not yet seen out of control, dangerous seizures. And, administering Diastat for the first time in the middle of the desert in Texas was not a good idea. In the end, I am glad no one gave me the script. I was not ready to use it, and if she had gone into respiratory distress in the middle of nowhere, I would never have forgiven myself. Unfortunately, during the coming weeks Savanna would educate me about when Diastat is needed.]

Once at Memorial Herman EC at the Texas Medical Center, she had several seizures in the waiting room of the EC. It was not until then did they feel this may be important. I remember being furious, listening them talk about what they had for lunch while my child was having seizures. I finally was able to get the attention of the staff. I was very aggressive in my demeanor, and end up apologizing more than once for being a bit too rude. However, I have learned, no one will advocate for your child but you. Few people know your child as well as you. A neurologist on call was able to see Savanna and within 10 seconds of holding her she seized. He agreed with my assessment that she was having seizures, big surprise, and should be treated. She was admitted, she was ‘loaded’ with Keppra, right away to try to control the situation. It was not the drug of choice, but without the results of the POLG 1 gene mutation test, it was one of our few safe choices. She had rough night, but now seemed as though she was getting help. We moved to the EMU (Epilepsy Monitoring Unit) at Memorial Herman in the early morning hours where she was hooked to an EEG monitoring unit. After 24 hours, we were told that she was having seizures originating from the right and left side of her brain. We were devastated. Up until now, we had this hope that the right side of her brain was more healthy, and maybe she could still thrive if a hemispherectomy was the procedure of choice (this is where the entire left or right half of the brain is removed). She is still so young that the plasticity of the brain would compensate and she could still develop with relative normalcy.

So she was released from the EMU, off the Phenobarbital and Keppra and her seizures were somewhat improved. The day of the release, I spoke with the doctor, and there were statements like “You may need to accept that your child will have a normal pattern of seizures.” We were absolutely crushed, as we could already see her milestones dissolving, again. We honestly felt like the situation was hopeless. I called our epileptologist just before she was to board a plane for France for 10 days, and had another short conversation that provided some relief about that subject. But still, I could hear the general concern in her voice about Savanna’s future. It was a very helpless feeling, as Savanna’s new normal was now complex partial seizures.

-Dad

The Honeymoon Period

Posted on September 3, 2012 by kenlininger

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

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

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

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

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

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

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

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

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

-Dad

(Ken Lininger)

Life on ACTH therapy and Vigabatrin for Infantile Spasms

Posted on August 22, 2012 by kenlininger

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

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

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

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

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

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

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

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

Dad
(Ken Lininger)

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Category Archives: Babies with Epilepsy