One week ago, Gigi, our Deaf 4 year old, had a Cochlear Implant (CI) inserted on the left side of her head. I didn’t write about it here because this decision comes with some controversy. The Deaf community often feel this is an attempt to “cure” your child’s deafness. It was not. That is all I need to say about our choice.
Our Deaf daughter’s deafness needs no “cure” and a CI certainly isn’t one anyway.
I took this picture of her at our Murder Mystery NYE Party.
She looks fabulous, right?
Her left eye is a little swollen and red though. By the next morning, it was totally red and bruised, like someone had punched her. We called her doctor, he said he wasn’t too concerned. A monitor goes over her eye in surgery. He thought maybe that had bruised her?
Then she began to complain of a severe headache.
Hmmm…I was told this was okay? But it didn’t seem that way? So, I made the decision to make the 90 minute drive to the large children’s hospital we had chosen to put the CI in. Tess had an appointment there the next say anyway. FullPlateDad and I decided Tess, Gigi and I could get this bruising checked and then spend one of our last night’s of winter break in a hotel, go to her appointment the next day and come back after a fun girl’s night out.
They took one look at Gigi and rushed her to the Operating Room.
She was bleeding from her implant site into the space between her scalp and her skull. The surgical team removed A LOT of blood. Over 100cc, hence the headache. We were told we would stay the night and then likely go home. This wouldn’t occur again, she should be fine. The implant seemed fine.
At about 2am, while we were sleeping with Gigi in her hospital room, Gigi woke me by banging her hand on the side rail of her bed. She looked exceptionally pale, so I went to check on her. She told me “Feel sick” and then “Want water.” I turned to get it for her and when I turned back, her eyes were unfocused and her whole body was clenched. I called her name, momentarily forgetting…Deaf. Then I began to lightly apply pressure to her sternum to get her to focus on me. Her eyes rolled back into her head. I pushed the button for the nurse. She stood there for a moment and simply watched Gigi seize.
Gigi has severe Congenital Heart Disease. We can’t just watch her seize. I knew a seizure was going to lead to larger issues.
So, I called the Rapid Response Team myself.
I explained the situation, and Gigi’s history, to the 18 people who now stood in her room. “She’s either bleeding into her brain now or she has an overwhelming infection. Either way, time is of the essence.” I told them. “You choose, CT or lab draw, but…let’s go!”
They seemed skeptical.
They moved though. They moved with the skill of a group of people who have danced together before, but are learning new choreography. They chose CT, so we rushed her there. Turns out, that was a good choice. Gigi was bleeding into her head again.
I looked at the little pull out bed where just 20 minutes ago I had been sleeping, not soundly, but well. A little face peeked out at me from under the blanket we had brought from home, thinking we would use it at our girls night at the hotel.
“Mom, is my Gigi sick?”
“She is, love.”
“They’ll fix her.”
She said it with total conviction. She wasn’t trying to convince herself. She KNEW IT.
Faith like a child.
A nurse with a man bun came to get me from CT. That’s all I remember about him, man bun. He said his name, I’m sure, but it didn’t register. There was a problem. Gigi wouldn’t be coming back to this room. Grab everything you can, we need you in the PICU. I grabbed my shoes, and slung Tess onto my hip, leaving everything else behind, and we RAN.
I was greeted by one very crowded room and an ICU attending who was obviously running a code.
“Very concerned.” “Blood pressure 40/20 in CT.” “Cutting a central line.” “Epinephrine drip.” “Call your husband.”
I told FPD that, once again, there had been a change in the dance.
The nurses who weren’t busy with their own patients took Tess to the nurses station to color Gigi pictures. As she walked down the hall, she turned back to me.
“I know my Gigi’s going to be okay, Mom. You found the BEST doctor and hospitals for me. Now they’re going to save Gigi. I know they will. Tell her to FIGHT, mom. Tell her like you told me.”
I didn’t even get to say anything. I was ushered into the room and asked to help. Gigi was awake and scared. They needed me to explain to her that they were going to poke her now to give her medicine to make her feel better.
I didn’t though. None of that was as important in that moment as what Tess had told me to tell her. Tess, the one who had named her sister before we even knew who she was. Tess, the one who insisted that this was HER Gigi and that we needed to go and get her from China. Tess, the one who wouldn’t even consider the possibility of losing her now.
Tess, the one with faith like a child.
As I stood over Gigi, her blood pressure falling to almost nothing, people cutting lines into her, but her eyes still looking up me, I simply signed to her.
“Tess told me, FIGHT, you MUST!!!”
Swear to God, Gigi nodded.
They kicked me out then.
Gigi made it.
After another harrowing trip to the OR, some damage to her heart from the lack of blood flow, and a surprise diagnosis of a clotting disorder, they removed Gigi’s CI and she is in the Operating Room as I type having her first stage of heart repair.
Her heart just couldn’t wait any longer to be fixed.
Our hearts can’t wait to kiss her face again.
This is a dangerous surgery. Not the repair in and of itself, that should be okay, but Gigi’s blood doesn’t clot normally, and she is going into this feeling fragile.
Again, we ask her to fight. Fight, Gigi. FIGHT.
–FullPlateMom, who needs her tiny precious Gigi to just keep swimming and warrior on.