Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, September 6, 2016

It's Complicated ... part 1

Ever since Meagan's "big event" in Virginia, she has been doing quite well.  She started back to school with her sisters, loves playing with her friends and loves riding her bus. Once the 4 week mark passed from her Virginia epileptic event, I breathed a sigh of relief.  Perhaps that was a one time occurrence and we were back to her "normal." 
Thursday afternoon, the girls decided to go to the dance studio early to practice and do homework before class.  Reilly had a flight to catch so we decided to head down early to not get caught in all the traffic heading south.  We arrived at the studio and as we were getting out of the car, Meagan looked a little off to me.  Sometimes if she wakes up, or is looking around after a long car ride, she will be a little "foggy" and then once she's acclimated, be just fine.  Unfortunately, that didn't happen. 

I noticed her defect (open area of her skull where it is easy to see increases in intracranial pressure) was huge.  And very hard.  It was so odd because in the days before, her defect was completely sunken in - to the point I even received notes from school about it.  The teachers were concerned how sunken it was.  To see it now bulging with fluid I was concerned something wasn't working correctly.  Here we were, repeating the up and down I had been seeing all summer.  It was reminiscent of when she only had one shunt valve and it never worked correctly.  I wondered if her top valve wasn't working properly.
I sat Meagan up in the middle seat to watch her.  Within moments she projectile vomited everywhere.  Head still hard as a rock.  Pressure.  She looked completely glassy eyed and immediately went limp in my arms.  She continued this cycle of vomiting and being lethargic and I knew she had to go in right away.  I called the dance teacher, a few friends and Brian (who works close to the studio thankfully) and arranged for the older girls to stay there at the studio with Brian while I started on my way to Children's.
Meagan was still completely lethargic.  I know we hear that term all the time ...."my child had a cold and was lethargic all afternoon.." but we also misuse it all the time.  Think overcooked spaghetti noodle - that's how Meagan's entire body was.  It was difficult to get her strapped in her carseat because of her lethargy but I was able to finally get it done.  I pulled out of the studio and hit the road to Children's.  We weren't that far thankfully but it was the afternoon so I was wary of traffic.
About halfway down the road, I noticed Meagan's color looking very bad in my mirror.  I glanced a few more times and then noticed that her right arm, eyes and mouth were seizing.The time was 4:30.   I pulled over on the highway to administer her Diastat  (rescue medication).  She vomited again so I knew I had to call an ambulance or she would start choking when I had to drive.  As I told the operator our location and gave her my number for GPS routing, I pulled Meagan out of her carseat and gave her the Diastat. Nothing happened.  As in, Meagan kept seizing, kept turning grey, and kept vomiting.  Things just got exponentially worse.  I looked at the clock and it had been a good 8 minutes... I asked the operator where the ambulance was and she assured me they would be there soon.  She said she also had called Fire EMS so between the two of them help should be there shortly. 10 minutes.  14 minutes. Nothing.
Finally at 15 minutes, I started to hear sirens.  The operator asked if EMS was there yet - I told her I could hear the sirens and then upon looking, saw they were on the wrong side of the highway.  We were right near an exit so they pulled off and she said they should be coming back around soon.  18 minutes.  19 minutes.  20 minutes.  Nothing.  Meagan was getting much worse.  Her convulsions had now gone in to both arms, both legs, her head, mouth, eyes, face.  She still vomited but only mucous every so many seconds.  She was not responsive to me.  I had to go.  I told the operator please tell police to not pull me over but I have to take my daughter in.  Not to mention cars were flying past at high speeds and Cara was in her carseat inside.  For her safety and especially Meagan's, I could not afford to wait any longer.
I put Meagan back in her carseat - which was even more difficult because now I not only had a limp child, but one actively seizing.  I managed to get her straps clicked in.  They kept slipping out of my fingers because everything was covered in vomit, but we got it done.  I jumped in the front seat of the car and took off.  There was traffic so I just kept praying that it kept moving.  Finally when my GPS said "one mile," I felt a little bit more relieved.  It was the longest mile of my life.  I couldn't see Meagan in her seat because except where she was strapped in, she was completely limp.  Every now and then when I had a chance I would take my foot off the gas pedal, push up off my floor and stretch my head to glance at her face.  I would see her eyes twitching and her head and mouth convulsing.  This is the only time I have been thankful for her seizures because I knew she was still alive if I saw that happening.
I turned in to the emergency driveway. I looked back and Meagan's lips were blue. There were two other cars in front of us when the first in line simply stopped.  The car in front of me and myself slammed on our brakes wondering what was going on.  The first car put on his reverse lights.  Uh, no.  He rolled down his window explaining he meant to go in to the main parking garage so could we all back up for him to move.  I'm typically extremely polite, except when it comes to the safety of my kids being jeopardized.  I rolled down my window and yelled "my daughter is not breathing - MOVE!" I may have had a few other words in that sentence.....  He finally started moving his car again and I raced up the ramp to the ER doors.  I got out, grabbed Cara, grabbed Meagan and walked in the doors.  As soon as the ER nurse saw us, she came and grabbed Meagan and she went straight back to a trauma room.  They laid her on the table and her breaths were very far apart and extremely shallow.  Once they got her situated, you could see her little tummy take in one more breath, and then completely relax and stop.
Immediately the room was swarmed with people - the ER trauma doc, several nurses, respiratory team..etc.  They worked on Meagan for several minutes to stabilize her condition. Her body just was not cooperating with the breaths and her blood gases came back with her CO2 through the roof.  They wanted to intubate her again, but, the ER trauma doc happened to be one we had worked with before.  He said since they had the staff available, he wanted to give Meagan a chance to breathe on her own so they kept respiratory and a nurse breathing for Meagan, while the others administered rescue medications to stop the seizing.  After 3 rescue medication doses, Meagan's seizure finally calmed.  It had been 1 hour and 17 minutes.
Once she was stable, they got a quick CT scan and then we stayed in trauma. The respiratory team kept breathing for Meagan while we gave her body time to come out of the event.  A few hours later she finally started to attempt shallow breaths when respiratory would stop.  This was a hopeful sign so they kept doing what they were doing until we got to a point where Meagan's body picked back up and started breathing again on its own.  At this point it was about 9pm at night. As things continued to calm, the team was comfortable moving us from the trauma room to an ER holding room while we waited for admission.
Meagan was admitted, taken to neuro floor and we settled in for the night. Neurosurgery and Neurology consulted on theories and what to do.  It was decided the next day that although she had improved, we would hang out that day to watch her and then do an MRI the following morning.  It had been a few years, and because of the large shift in her status quo, Dr. R and I agreed it was a perfectly logical non-invasive next step before they let me go home with no answers.  That way we would have a new baseline and go from there on what was best for Meagan. 
Saturday they got her in fairly early.  She went in and out of her MRI without a hitch.  We were told there was nothing pressing and we would go over the results in detail with Dr. R later that week.  We were going to be discharged! I was more comfortable with that knowing the MRI didn't show anything emergent and Meagan had been back to herself, drank a bottle, and was watching cartoons.  I started packing things up and all we were waiting on was the prescription for Meagan's new rescue med (since Diastat had not worked the last two times) to come through. Meagan had drifted off to sleep and then I found out there was a little delay finalizing the new medication plans because they had to find a pharmacy that would distribute it to us.  I also needed a nurse to come teach me how to use the new med so the floor could sign off on it.  That delay would prove a Godsend......


  1. This sounds so terrifying! At the beginning of the post you mentioned an event in Virginia?? Was it similar to this?

    I hate seizures! For us, they have proven to cause more stress and angst than the hydrocephalus for our Ellie lately.

    1. It was extremely similar to this - shunt malfunction symptoms.... then into major med resistant seizure that made her stop breathing.