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
Ken, Not what I was hoping to hear. It sounded positive yesterday, and I guess I foolishly thought it would be like the first time too. Christine
After some time on a bumpy unpaved trail of survival, we have found the paved road to recovery. Things are better, will be home real soon.
hello, ken i’m Murray 18 from Cardiff . I am writing a book about life living with epilepsey how it has efected me what support networks i have had. other storys of people who have been through epilepsy with me ECT. I have had epilepsey since i was 6 months old i am now 18 i had my first surgery in 2012 FRONTAL CORTEX DISPLASYIA surgery to remove dead brain tissue. sadly to this day I still have seizures but wanted to ask you and Savanna would you write me a 4 page story about Savannas epilepsey to be as part of my book where i am speaking to a family about how the Epilepsy effects them and how life is different 🙂 🙂
Nurses can be so frustrating. I’m usually not a confrontational person, but I know I’ve had to stand my ground with them too. I know they have a tough job and are pulled numerous directions (doctors, hospital, parents), but some are definitely better than others. I hope you got one that works better with your family!
Savannah IS a very special girl. I think she has made amazing progress, which shows her determination and spirit. She and her condition IS worthy of study. I know it’s rare, but I’m surprised someone has not studied her yet, though I don’t know how that works. Just know that even if it’s not in a technical journal, her story via your blog is helping some other family out there right now.
I hope and pray that her meds keep her comfortable, relaxed and pain free, and I hope that you and Rebecca are able to get a little rest as well.
Please let me know if you’re up for visitors. I know sometimes it’s nice to have a friendly face stop by, but I also know there are times when things are too chaotic for visitors. So, just let me know. I’m here if you guys need anything.
It has been quite a production this time around. The recovery from the first resection was very different. I am trying to be objective as I look back on the duration of our stay in the PICU, and I can see how this is highly irregular, for everyone involved. I feel like there are too many people trying to be ‘in charge’ of her care. And, in not too many hours from now, they will be removed from regulating every moment of her life here in the PICU, and her care will be returned to us.
Savanna is doing great, and we are moving to the EMU today for a short stay. I appreciate the offer to help and we may take you up on that in the near future. It was definitely chaotic here that last few days, and not the best environment for visitors.
Talk to you soon,
I didn’t know my sister knew any “expletives”!!!
Hopefully, that brought a brief smile…
Yes sir. Congratulations on the birth of your daughter. You are a great Dad.
I cannot fathom the pain and frustration all of you are going through. Please know that I am praying all the time to God, who I know has to hears us, but seems far from us at times. Not just words. I am praying for strength and guidance for everyone concerned. I hope that sweet innocent baby has relief soon. Tell Mary Lou I love her and that I miss her. Melinda
Thank you very much for expressing your concern for our situation and the prayers. You are right, Savanna’s doctors and caregivers need strength and guidance too. Mary Lou has been a great help this week with the big kids.
Thanks for following along,
O M G…..What a story…I can’t imagine going through all this. Prayers continue to come from a Virginia Eucharist Sister. You all are great!!! Lovingly, Pat