Our baby is home….

Posted on April 8, 2013 by kenlininger

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

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

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

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

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

One step at a time.

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

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

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

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

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

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

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

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

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

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

Breathe Eat Poop

Posted on April 4, 2013 by kenlininger

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

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

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

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

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

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

Breathe.

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

Eat.

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

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

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

Poop.

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

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

-dad

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

Posted on April 3, 2013 by kenlininger

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

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

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

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

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

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

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

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

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

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

-dad

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

Gallery

Posted on April 1, 2013 by kenlininger

This gallery contains 7 photos.

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

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Tag Archives: Focal Cortical Dysplasia Type 1