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