My husband arrived home from CQ, smelly and needing sleep. I was lying in our bed, exhausted from my daughter screaming all night. I told him I didn't know what to do, and without any discussion, he bundled her up and took her to the ER.
It was hours before I heard from him. The ER docs didn't want to listen to him, either, but because he worked in the hospital, he was able to make some demands few other people could. Finally, they put a stint in the crux of her arm and agreed that there was something terribly wrong with her. I rushed over to the hospital, leaving my younger daughter with a neighbor.
By the time I arrived at the hospital, they had finally admitted her. She was lying in a hospital bed in a room by herself, a needle and tube sticking out of her arm. They were prepping her for an MRI before performing an emergency appendectomy.
"An appendectomy?" I was confused. "But she can't walk, how is that her appendix?" She also hadn't complained at all about her stomach or side hurting.
They came to get her for the MRI, and I walked with her - she was in a hospital bed - down to the lab. Emma was confused and upset, and distraught at the thought of the MRI. To make matters worse, I couldn't go in the room with her, because of my pregnancy, so I waited nervously outside for them to finish.
After we got back up to the room, the nurse told us that they would have to "clean her out" before the surgery. They said they would be giving her a drug called "Go Lightly," a powerful laxative that would be administered directly to her stomach via a feeding tube inserted down her throat. I was bothered by it, but Emma was getting worse every day and I thought the doctors knew what they were doing.
As we were waiting for the nurse to return, I looked over at Emma's arm and saw that it had swelled to about three times its normal size! The IV, inserted by a Medic in the ER, had infiltrated her arm, causing the fluids to go directly into her muscle tissue. Few things have caused me more terror; I called the nurse in a panic, then called my friend from the chapel to ask her to say blessings for my daughter. I feared she was taking a drastic turn for the worse.
My daughter's illness could be divided into two parts: Before she was diagnosed with Guillain Barre Syndrome, and after she was diagnosed. The first part was a circus of incompetence, rudeness and arrogance; the second was the polar opposite, although they did treat my daughter like a side show attraction.
The nurse we had that first night ... oh, that terrible, horrible and awful nurse who thought she could do no wrong. The one who thought that I was not only wrong but hysterical. The one who thought I was overreacting because of some little thing like a burst appendix. If God is taking requests for people to strike down with lightning, I would like to add her to the list.
It began when she couldn't comprehend why I would be upset about my daughter's arm swelling up to the size of a pool toy, continued by her getting snitty at my daughter for - Surprise! Surprise! - screaming all night at the hospital and getting astoundingly annoyed with my daughter for dirtying so many of those absorbent pads after they gave her the epic laxative. That's right, she was angry that the laxative was working, completely oblivious to my daughter's horror of messing herself every 15 minutes.
Seriously, God. Can you send all Four Horsemen directly to that lady's house?
- Guillain-Barré syndrome - NHS Choices
Guillain-Barré (pronounced ghee-lan bar-ray) syndrome is a rare but serious condition of the peripheral nervous system.
After the MRI, they thankfully realized that my daughter's appendix was completely fine; they quickly cancelled the surgery.
But Emma was clearly not recovered. In fact, she seemed to be getting worse.
So then, we had the displeasure of being assigned the young female resident who most assuredly, definitely and absolutely had "something to prove." Emma was little more than a lab rat to this young, slender medical student. Her mousy hair was tied in a prim bun on the back of her head; her judgmental stare scanned over me as I spoke about my daughter's symptoms. There was an actual doctor assigned to Emma, but he apparently didn't want to be bothered with her.
So we got ... the robot.
Emma had moaned in pain, yet again, for the entire night. I asked the nurses for something to help her sleep or alleviate the pain or ... something, but they refused to give Emma anything. I slept in the fold out chair next to the bed, barely getting any sleep myself.
I hated the robot from the moment I met her. I don't think I had ever met a doctor with a worse bedside manner, besides the substitute orthodontist I had to go to when I was in middle school. The fat, greasy dentist with the thick eyeglasses who growled, "This pain and bleeding is normal," as he carelessly scraped at the inside of my mouth with various dental instruments.
The robot came into the room already in a hurry, around mid-morning, and asked me to come to an office to look at the results of Emma's MRI. Emma had already "walked" down to the playroom on the pediatric floor of Madigan; she was only able to get there because she had her IV tower to support her, but she was being encouraged by the medical staff to walk. You know, so she'd improve.
We sat at the desk looking at the computer screen, and this horrid, arrogant young witch tried to convince me that the reason my daughter couldn't walk was because she was ... constipated. Yes, that was the medical field's best answer for Emma not being able to support her own weight or walk. Constipation.
To be fair, the MRI showed that Emma was so backed up, her bowels were beginning to move into her chest cavity, restricting her breathing. I didn't know that could even happen. However, that issue had been resolved the night before, with the Go Lightly.
"I don't understand how being constipated would make it so you can't walk," I puzzled. "She couldn't even make it down the hallway."
"What is her diet like?"
I thought for a minute. "Well, Emma eats really healthy. She eats frosted mini wheats and apples. And drinks milk."
And I swear to God and all His holy angels, this resident looks at me in complete seriousness and says, matter-of-factly, "Well, milk can be quite binding."
Wow. You went to medical school to learn that.
Emma spent a couple of short days in the hospital with absolutely no insight into why she was waking up screaming in the middle of the night or why she couldn't walk. They even had a psychologist come talk to us about Emma's "night terrors." Nothing was resolved. No one was cured.
We returned home. Home to the screaming. Home to Emma not being able to walk. Home to hopelessness.
That Friday, we had a follow up appointment with the robot, but she was late getting to the appointment. And that one mistake turned out to be our Blessing.
You can read Part Three here.
You can read Part One here.