I realize that I have never written, in detail, about the day Emma had a grand mal seizure, or what the days held that led up to that horrible event on March 31st. I wrote about feeling “numb” on April 1st, but never about March 31st.
So I am going to attempt to do that now…
I have to to warn you that my emotions on this subject are still very raw, and the 2 images I am going to be posting are very hard to look at. I wont be offended if you leave now, before you read any farther, in fact, I will totally understand.
Before I get to March 31st, I have to start back in February. Emma went into ICU because she had a 104.5 fever that would not go away. All of her labs and cultures were coming back negative of any virus or bacteria for the first week… finally we got the results for her nasal swab. Emma had meta-pneumo virus that was attacking her lungs and doing major damage to her kidneys. Her kidney function was poor and her labs showed that she had significant kidney damage. We were told that she would need dialysis for atleast a week if not more. That was March 1st. That night I posted this update.
This picture was taken the night of March 1st
The next morning I wrote about her arrest the previous day, but because she did have “purposeful movement” the doctors did not want to take her off of the dialysis machine to do an MRI. (I was in complete support of this, because her kidneys were the number one issue at that time.)
If I would have known then what I know now. That “3-4 minutes” of having oxygen in the 30’s-40’s (known as cerebral hypoxia) is what caused her brain to seize on March 31st, and continued to seize for the following week.
March 30th she was sent home with a clean bill of health. Not even 24 hours later, she had one of many seizures.
I was sitting at the kitchen table with my Mother in law, Easton was in the kitchen in front of the sink, and Emma was in her playroom right next to the kitchen. I heard something coming from the playroom, Emma likes to throw things so I didn’t think anything of it. I asked Easton to please check on her….
That is something that I still regret to this day.
I heard Easton scream in a tone she has never before had: “MOM!! Emma is on the floor… what is she doing?? Oh My God!”
I rushed to see what she was talking about, and there on the floor was my precious daughter, twitching and seizing. Her body flailing about under her table. I grabbed her up and told my mother in law to call 911. I honestly thought she was having a stroke (she had just had a Dobutamine Stress Test the day before). Her eyes were looking up and to the right, her mouth was making shallow breath sounds with audible gurgles, and then she just stopped. I honestly thought that she had taken her last breath in my arms. But as soon as it stopped, it started back again, this time worse. I told her it was going to be okay, I stroked her hair and looked into her eyes, but she wasn’t there… they were blank and still staring up and to the right.
She looked like she was in so much pain, and I prayed for God just to take her and stop her pain.
The ambulance finally got there, and proceeded to lay her on the living room floor and talk to her. Emma had what the paramedics called tonic clonic seizures. Easton had called her father and he was on his way home. All she could say was “Its Emma, come home!”
I just stood there, not knowing what was happening. I couldn’t cry, I couldn’t process what was going on. I was numb. I felt like my daughter was dying and all I could do was watch.
They got her in the ambulance and took her to the closest hospital. The paramedics gave her a medication called Versed to control her seizures. While in the ER, she continued to seize but not as violently as she was doing before. They had to put a breathing tube in to help her not hyperventilate. They called for the helicopter to take her to ACH.
What happened in the ER is a blur. It all went by fast, but slow. I can see snippets of it, like a dream, but I still can’t bring myself to try to remember. One thing I do remember though is sitting by her bed holding her hand in mine, willing her tiny fingers to squeeze my hand…. you hold onto whatever hope you have in times like that.
Once we got to ACH, they did a continual EEG which showed she was sub clinically seizing and continued to do so for 3 days. They finally got the seizures to stop with Keppra and Phenobarb (two drugs that she is currently on at home).
3 days later she dropped her oxygen and her respirations became shallow. I called the nurse in because she was unresponsive and she confirmed my suspicion that Emma was still having seizures and paged the neurologist. Dr. W sat Mark and I down and told us that he was very concerned for our daughter, and that he didn’t think she was going to make it if we didn’t stop these seizures. Those words, I will never ever in my life forget. He suggested that Emma be put in a medically induced coma to stop them:
When other medications fail to stop seizure activity, coma-inducing drugs may be used. Pentobarbital, thiopental, propofol or midazolam are frequently used for this purpose. Continuous intravenous administration keeps the patient comatose until normal brain activity resumes. The care team closely monitors for the resumption of seizure activity as the drug is slowly withdrawn. Intensive care treatment is necessary while a patient is under the influence of these powerful drugs.
Emma was put into a Pentobarbital coma and remained there for days. (I can’t recall how many because honestly, the 3 months ran together) She was monitored for seizures during this time by EEG (that is what is under the wrap on her head)
This picture was taken while she was in the medically induced coma:
After she awoke from the coma, she was diagnosed with Cortical Vision Impairment and could no longer speak. (Although she is saying a few words now)
Honestly, I haven’t looked at these pictures in a long time. It’s too hard. I cannot believe that a virus could steal my daughters perfect vision and her beautiful voice, leaving her brain the way it left it. I still don’t understand the “why’s” but I am working on enjoying the “here and now”. I see pictures of her before this happened and I tear up.. I miss her so terribly. I have asked God why…. why in the world would He allow this to happen to my daughter.. and honestly, I don’t have an answer to that one. I don’t doubt His love for me, but that doesn’t mean that I have to enjoy all of the heartache in my life.
I am waving my white flag and praying that He sees it… because this last episode just about did me in. It about did my family in.
It almost did Emma in.
I know that someday God will call her home, and I know that it will be all I can do to let her go… but I am so thankful that we have been given the gift of having her for a little bit longer.