Flawed Yet Functional

To read the rest of the story, click here.

At this point in the story, I think there’s a need for a recap.

I had a hemorrhage in my brain which induced a horrific headache that eventually landed me in the hospital. The hemorrhage was an AVM rupturing in my brain. I had to stay in the hospital for weeks because I had a second bleed and was considered high risk. I’ve had the AVM removed through surgery, and now I’m working my way back to consciousness after being put into a medically induced coma after the surgery.

I’ve detailed some of the events that I remember during this gradually awakening process, the breathing tube coming out, the feeding tube going in, eyesight issues, and hallucinations (part 1 and part 2), but I haven’t spoke directly about my physical state. I’ve mentioned it a few times, but I’d like to explain a little better if I’m able. I want to show you just how good God is and how far he has brought me.

First of all, I have a faint memory of a squeezing sensation on my right lower leg sometime during the five days I was in a coma. I remember thinking, “I must be alive!” because I could feel the rhythmic squeezing. As far as I can tell, this was my first memory after the surgery. Not having spent a lot of time in the hospital before, I thought the squeezing was the blood pressure cuff. It did seem odd that it was around my ankle, but who am I to tell the doctors where to read my blood pressure?

As I began to wake up, the doctors are nurses would come do the same type of neuro-checks they did on me pre-surgery. Or at least, I thought they were the same checks. They would grasp my hands and wrap my fingers around their fingers and tell me to squeeze as hard as I could.

I did, or thought I did, while half paying attention to what I was doing. I’ve done these checks a MILLION times. Why do they keep checking? I’m obviously fine. Then I’d doze back off to sleep.

The reason why they kept checking is that, obviously, I wasn’t fine. I was tremendously weakened on my right side due to the extended time in bed rest, at this point it’s pushing four weeks, and my left side was not responding at all.

It slowly began to dawn on me that the doctors were putting my hands and fingers into place. I wasn’t moving them myself.

They told me to squeeze my fingers, but there was no movement on my left hand.

One time, I finally looked down at my left hand, and Dr. Figueroa said, “Yes, look at them! Make them move!”

And I couldn’t.

I couldn’t even begin to know how to make them move. I was so confounded because I couldn’t make my left side move, but at the same time, I didn’t know how to make it move. How do you know how to blink? You don’t. You just do it involuntarily. I’m not saying that gross motor movement is an involuntary action, but formulating the command to lift your arm is not something you place conscious effort on. You can just think, “I’d like to reach out a pick up the glass on the table.” Then your arm picks up and grasps the glass. You don’t think about how to lift your arm.

Going back to the “blood pressure cuff,” that squeezing sensation was a cuff wrapped around the calves of both of my legs that contracted and relaxed to keep the blood flowing. It prevents blood clots for people who are lying in bed for an extended period of time. I absolutely 100% had no idea that I had a cuff on my left leg too.

After checking my hands to see if I could squeeze, Dr. Figueroa would go down to my feet to see if I could wiggle my toes or feel pressure or pain in my foot or leg. The only thing I could feel is a faint far, far away prick when they inflicted pain on my toes. It was almost as if it wasn’t me that felt the pain. It was so far away.

Dr. Figueroa sat with Dan and my parents to explain that there was no way to predict if I’d regain functioning on my left side, and it was an even bigger mystery how complete that functioning would be. The harsh news is this: This might be the new normal.

The risks of the surgery are great, but I couldn’t live a normal life with the AVM in my brain. It had to be removed and now I’m finding out what the consequences might be.

To read the first part of the story, click here.

Scary Night

Now this wasn’t a scary time for me, like before, God had me wrapped in a blanket of peace. I was more in a state of calm confusion, wondering what Dan and the doctor were so concerned with.

I’m fine!

As I’ve mentioned before, the red light on my finger was my beacon in the night to get Dan’s attention if I needed something. At this point, Dan stays up with me all night, and my mom and/or dad stay with me all day so Dan could sleep.

I am not able to roll myself over or speak to ask for meds. So when I want something, I flag Dan down and we go through a mixture of stellar sign language and gestures to figure out what I wanted.

Poor Dan.

Mostly it was a guessing game on his part: “Are you in pain? Do you want to be turned over? Do you have to go to the bathroom? Are you cold? Do you need the nurse?”

This night, I wanted something, I don’t remember what, so I wave my right hand.

Dan, “Honey, I’m right here.”

I’m laying on my side, and I can’t see him. I’m not sure what he means, “I’m right here.” So I wave my hand again.

Dan, “Emily, I’m right here. Can you see me?”

Right were? I can’t see you anywhere!

Dan, “Emily, look at me.”

I think I’ve figured out that he is on my left side, but I am turned on my right side. I might have turned my head or not at all. I’m not sure. I can’t roll myself over so I just lay there.

Dan goes for the nurse.

Dan explains to the nurse our waving procedure, and that this time, I didn’t look at him when he is sitting right next to me. I really couldn’t see him, and I didn’t really understand the big deal of the situation.

The neuro-doctor on staff for the night comes into my room. He is a young little pipsqueak fresh out of med school, couldn’t be more than a few years older than me. He discusses with the nurse and Dan then comes over to check me out.

Stuffed-shirt-doctor to Dan: “Can she speak?”

Dan: “She can respond to yes/no questions.”

I could nod, shake my head, or give hand motions, like a thumbs up, but that was the extent of my communicating skills at that time.

Stuffed-shirt-doctor: “Can you hear me, Emily?”

Me: Nod head.

Stuffed-shirt-doctor: “I’m going to test your vision. Follow the light with your eyes only. Don’t move your head.”

I really tried to follow the light, and at times, I thought I was doing it. I mean, I was having neuro checks all the time before surgery and acing them, what was different this time?

Nurse: “Wow, that’s a really bright light.”

Side note: they use the oldest flashlights with the weakest batteries to do their neuro-checks. They always warm you, “bright light.” But it’s never bright.

Stuffed-shirt-doctor: “Yeah, I made sure to get a bright pen light. It’s the brightest available.”

Right then and there I decided I didn’t like him. He was more concerned with the wattage on his pen light then the condition of my brain.

Slight exaggeration, but I did decide I didn’t like him them. Arrogant snot.

Stuffed-shirt-doctor: “It would appear she has an oral fixation on the right. It may or may not go away with time. We’ll just have to keep watching it.”

This means that the brain was irritated or swollen from surgery, and it was not allowing my eyes to look to the left.

Weird, huh? I could compensate by turning my head, but looking just with the eyes didn’t work.

There are many risks to having an AVM removed from the brain, some physically debilitation and some mentally debilitating. The concerning part for Dan and my parents is that there is no guarantee if I will regain full functioning and when that will happen. It really is a wait-and-see game as the patient recovers from the surgery.