Support for Those Living with Adrenal Insufficiency

Get Here Now, She’s Dying!

Written by Jenny W.

On a Sunday morning in May 2007 my husband and I went to check on our 18 month old daughter. We were surprised that she had not come into our room to snuggle like she had done every Sunday before. When we walked into her room we saw her lying in her bed with her eyes rolling back, completely unresponsive, in a comatose state. She had just finished having one of many ongoing seizures that she had that morning.

EmmawebWhen I picked her up bile spilled out of her mouth. I ran into the living room holding her lifeless body in my arms, screaming for my husband to call 911! While he did that I was trying to figure out the emergency injection. I had never given it to a child before. I was so scared that she was not going to wake up. The whole thing seems like a blur. Thinking back, I can remember the operator on the other end on the phone telling my husband to explain what adrenal insufficiency was since she did not know how to explain it to the paramedics, and all I kept saying was “Get here now! She’s dying!!!”

When the paramedics arrived, (which seemed like forever but really was only a  few minutes since we lived less than 5 minutes away) Emma was still lying in the same place on the floor where I had just given her the injection. They kept asking me WHY I had given her the injection and what it was and yelling at me saying I should NOT have given it! They took Emma to the truck and I remember the  whole neighborhood coming to see if she was ok. All the while I was trying to explain her condition to the paramedics.

One of the medics that had been working on Emma in the ambulance came out and said that her blood glucose was only 13 and that we needed to leave now! We spent 3 ½ hours in the ER in town, she was unresponsive as they worked on her the entire time. As if seeing all those tubes and equipment hooked up to her wasn’t scary enough one doctor told me to “prepare for the worst, that even if she does come out of this she will more than likely be brain dead.” It was the worst thing to hear as I watched my baby lay lifeless on the table.
There was one thing that gave me hope…a single tear that fell down her sweet face. It was the glimmer of hope I needed just then. We spent 3 ½ hours in the ER, 3 ambulance rides, a ride in flight for life and a week in the ICU trying to find out what the cause of the crisis was. The day they told us they were discharging us, I requested the doctors to do a bladder ultrasound. We were supposed to return to the hospital in 2 days to have a routine one done anyway, so they agreed.

The doctors discharged us against our wishes since they still were unsure why she had the crisis in the first place. Within the first few hours of getting home we received a phone call telling us to get back there ASAP. Something showed up on the ultrasound. A back flow of fluid had caused damage to her uterus, cervix, and ovaries causing a severe urinary tract infection that in turn, caused an infection throughout her body. This caused her body to shut down. The situation was worsened by improper stress dosing since she showed no signs of illness even up until the night prior to the crisis onset. Ultimately, Emma had an emergency 6 ½ hour surgery, along with many more to follow.

On that fateful night, as we put our child into the safety of her bed, Emma, showed no signs of crisis. She never spiked a fever, vomited, acted funny or looked any different. We went to bed the night before with who we thought was a happy and healthy little girl. We never dreamed that we would wake up to find her near death.

Since that Sunday morning, I have had countless sleepless nights, watching and listening for any sounds that come from our daughters’ room. I spend every day prepared for the next crisis from one of our 3 adrenal insufficient daughters.

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