Sunday, November 7, 2010

A big one hits Jennah ...

Halloween 2010 will undoubtedly be one of the most memorable Halloweens for us! It was our first attempt at participating in Halloween festivities here in Dubai. The weather was actually pleasant with a little breeze. I had assumed that we would just dress the kids up and let them run around the outdoor mall and not expect any candy. It was pretty cute, actually … what they do here is arrive with a bag of candy and trade with each other. Such a great idea! A & B were confused as they hadn’t arrived with any goods to trade. Luckily our friends from school who had instigated the whole affair came prepared for the crazy Americans who knew little else from going door-to-door on Halloween. After a lot of running around and mistaking women in abayas for witches, we rushed the children home around 8 PM as all the Year 2 kids had spelling tests in the morning!


A is a "hip-hop" fairy and B is the Spider-Man
 We managed to get A & B into bed by 9 PM … a little bit late, but not too terrible. Jennah was still awake, a bit wired from all the festivities. She began humming herself to sleep as she often does and she was even giggling a bit as she fought sleep. I must of dozed off by her side, because the next think I knew, I felt a big jerk from her legs that started me out of sleep … then all hell broke loose: breakthrough seizures, which became status epilepticus … this is bad.

9:44 PM – Jennah jerks and begins vomiting; Eyes fixed to the left and dilated; non-responsive to light; shallow breaths; apneic (lips turned blue)

10:01 PM – got a hold of her neurologist in the U.S.A. to confirm dosage of rectal Diazepam (Valium) to administer

10:07 PM – administered 5 mg rectal Diazepam

10:19 PM – seizures stop

10:25 PM – paramedics arrive

10:56 PM – arrive at American Hospital’s ER (cannot believe how long it took us!! should've driven ourselves, but we were not in the state of mind to do so); seizures begin again as soon as we pull into the ambulance bay

11:00 PM – doctors order and administer another 5 mg rectal Diazepam

11:13 PM – seizures slow down, but do not altogether stop; 270 mg (not sure why this amount since it was supposed to be 20mg/kg) phenytoin (Dilantin) administered over 30 min; no change in seizures

0:01 AM – 1mg IV Valium administered; seizures stop

1:25 AM – seizures begin again

We head up to the ICU, which for the life of me, I cannot remember how the hell we got Jennah up there! Was she on a gurney? Did we go in an elevator? So weird that I can’t remember …

Anyway, we agree to take “aggressive” measures to stop the seizures. She had been seizing for nearly 3 hours and we have to get them to stop! The longer they go on, the more likely that there will be damage and regression. Ironically, since Jennah is so delayed and damaged to begin with, odds are in our favor that she won’t lose much more … if that makes any sense. So bring on the phenobarbital … we HATE this medication. It’s a big depressor. After all the Valium/Diazepam she has had, plus the phenytoin, adding this drug will severely jeopardize her respiratory system. Wonderful. So she needs to be intubated and put on a respirator, “just in case”. Additionally, they’ll throw in a central line straight through her jugular vein for easier blood draws and medication.
Jennah in the ICU on a ventilator w/ a central line in her jugular vein

She looks like hell, but what do you know? Phenobarbital works again … no surprise. This was also the drug of choice when she started seizing at 12 hours old. And back then, it took us 16 days to wake her up‼ During the next 24 hours, she seized 4 more times and was given Midazalam (Versed) each time, which slowed them down to a stop. Subsequent EEGs showed no more seizure activity. The video shows one of her "aftershock" seizures and the nurse administering Versed to make it stop.

video

Although Jennah was far from her normal self and barely awake, I begged the doctors to discharge us. I was frustrated with the nursing care, not to mention the hell that my husband and I had to go through to coordinate and care for our other two children. The poor kids missed their little sister, too! But seriously, there were only 2 pediatric nurses on staff (literally‼) and only 1 of those 2 knew how to feed her through the G-tube. Ugh. So we were finally discharged and we bee-lined it straight home! Oh, and when I was about to pull into my street, the hospital calls … they had forgotten to give us the discharge instructions. Not surprised. To all my nursing friends and brother in the U.S. … you are incomparable to the rest of the world‼

Thank you all for the phone calls, texts, FB messages, etc … it was hell for us, but you made it bearable. Chris and Cristina – I can’t begin to tell you how much your visit helped. And Chris, you always leave me speechless, but with a clean house and a full stomach. :) (((HUGS!)))