The Day in Which I Lose It

You may recall from earlier in this process me explaining my hatred for all things medical, doctor, blood, needle-related. I also have described the perfect peace I was in through the whole ordeal. I believe now more than ever that God’s strength is made perfect in my weakness.

In the effort to keep this chronicle as real-to-life as possible, my faith faltered, and I lost it on Thursday, December 10.

1. Since I could not walk yet, I had to get heparin shots every 8 hours to prevent blood clots. These are the worst shots I have ever had. I have a little experience now to add some weight to that statement. They are the worst.

2. I am still in the hospital so I must have an open IV port until I leave. December 10 is day three of my every third cycle. Even though I’m leaving the next day, I have to get it replaced.

3. The current location of my IV is my right hand. They used a very small IV, and it wasn’t put in very well. So it is constantly getting kinked. The nurse keeps messing with it, bending it, putting more tape on, more fiddling with it, etc. Now this site is bruised and painful.

I decide that I cannot take the painful IV port any more. I want it moved now since it will have to be done sooner or later anyway. I ask for an experienced nurse as they always have trouble with my thick skin and small veins.

It takes FOREVER to find an experienced nurse which gave me plenty of time to get myself all anxious inside.

I ask for my face to be covered, and they begin the procedure of removing the old and putting the new in.

“Experienced Nurse”: Ok, I’ve got a good vein. Are you ready?

Nod.

 “Experienced Nurse”: Ok, Big poke.

I brace myself.

BIG poke, I start to cry.

“Experienced Nurse”: Oh no.

I start to sob. She blew the vein. She’s going to have to start over in another spot.

“Experienced Nurse”: It’s ok, honey. I think we can still use this one.

Baloney. I’m pretty much hysterical at this point. I cannot stop crying.

“Experienced Nurse”: It’s fine now. The IV is in. We don’t have to poke you again.

They uncover my head as I’m still sobbing. My mom is wiping my face with a wash cloth to cool me off and try to get me to cool down. Then walks in my nurse with my next heparin shot.

If I wasn’t a basket-case before, I am now.

She wisely says we have some more time, she’ll come back later. Smart lady. I think they would have had to use restraints to get that shot in me at that moment.  

Next Step: In-Patient Therapy

My healing is progressing nicely. I continue to have speech, occupational, and physical therapy twice a day. Dr. F. says I can leave the hospital. Yay! I’m not walking yet, and have no movement in my toes, arms, or hand, so they recommend in-patient therapy either at Mary Free Bed or Spectrum Continuing Care. We’ve heard great things about MFB, so we choose to go there.

I’m no longer in need of the ICU facilities so they put my name in for a regular room. The hospital is full though so I have to wait it out in the ICU. Darn!

The hospital gets us all set up to go to MFB. They request a private room for me (Praise the Lord!), but MFB is very full too, so we don’t know if I’ll get one.

All the plans are set. I’m going to MFB on December 11. I had been admitted to the hospital on November 14, 28 days prior.

Real Food, part II

Now, it all seemed fine and dandy: I was able to eat again so life is good, right? Well, not quite. I still had the feeding tube in because they were concerned that I wouldn’t get enough calories. But I can’t eat a full meal because the formula from the feeding tube is filling my stomach. So we got to go one way or the other right?

Now I’m not sure how this worked. I think they left the feeding tube in, but shut it off so that if I wasn’t eating enough, they could turn it back on easily and quickly.

Wouldn’t you guess it? I wasn’t eating enough. It isn’t that I wasn’t trying. It’s just that hospital food is disgusting! Truly, ask my family. To boost the calorie intake, they brought me a protein shake between meals, three times a day. Protein shakes are good the first few times and then…

So I have this problem with bad food, I just can’t eat it. I’ve been like that all my life. I like my homecooked food. The hospital food was so far from anything good it wasn’t funny. Now several times a day I’m being threatened with the feeding tube if I don’t up my calorie intake.

Prior to surgery Dan would always finish my meals for me because they gave way too much food and that way Dan didn’t have to leave to buy food. Now the nurses are food Nazis. We have to show or list how much of each meal I ate, and how much Dan ate.

I’ve never counted calories in my life, but at every meal, I’d have my mom or Dan estimate how much of the food I needed to eat to fulfill my requirement. It was so hard. I never would have thought that being required to eat more could ever be a bad thing.

Real Food

Food was a big dilemma in the hospital. I was still on a feeding tube as they were very concerned about getting the proper number of calories in me to get my body working on healing. I had an evaluation with the speech therapists to see if I could handle soft food and liquids.

Did you know you can still eat when you have a feeding tube in?? You can! I had no idea. I kind of thought my throat was totally filled with the tube. It’s not.

Anyway, because of the semi-paralysis on the left side, the doctors aren’t sure I can swallow or chew. So the speech therapist brings in a variety of things to try. I ate itty-bitty bits of crackers, applesauce, and jello. Oh man, solid food is SOOOOOOO good! I couldn’t eat very much because the feeding tube keeps the stomach pretty full, but I was loving my first meal.

Liquids are another story. Did you know that “normal” liquids: water, juice, milk, can choke people if their esophagus isn’t working quite right? Who knew? Not me, that’s for sure. Due to this potential hazard, I was on thickened liquids to start.

The juices are like drinking partially solidified jello. That’s pretty tasty. Thickened water and milk, on the other hand, are not. It’s nasty, nastiness. It doesn’t help that the milk isn’t really milk, but they stir in cornstarch or something to thicken it. I guess the flavor really isn’t that different, but texture makes a big difference.

I pass my evaluation which allows me to eat real food. Yay!

Physical Therapy

There is a white board in every hospital room that tells the date, nurse on duty, diet, husband’s name, and goals for the patient. My goal after coming out of the coma was to sit up in a stretcher chair. The chair is called such because it can lay totally flat so the nurses can lay you in it, then they slowly sit you up.

I needed to use this char because I couldn’t stand or walk yet. Physical therapy hadn’t started yet, so the nurses weren’t taking any risks before I had further evaluations.

My goal on the board was to sit up in the stretcher chair for 1 hour. Being a Type A, goal oriented person, I was determined to meet my goals in the timeline given by the doctors and nurses. I wasn’t going to be the slacker of the class! However, I was SO tired. I was still sleeping a lot during the day, and at this time, I still thought every time I woke up was a new day. I was getting more and more dejected because I thought I was failing my goals! I really don’t know how long that goal was on the board, max 2 days in my guess, but at the time, I thought it had been up for a week without me even attempting to leave my bed.

The first time I was put in the chair was Tuesday night so I could watch The Biggest Loser finale with my mom and dad. I made it 1 hour and 30 minutes sitting up! It may not sound like much, but that is a LONG time when you’ve been flat on your back for weeks on end.

My dad sat next to me and held my hand throughout the show. I love my mom and dad.

Shortly thereafter, I began physical and occupational therapy in my room. Physical therapy focuses on gross motor movement, mostly walking and moving your lower extremities. Occupational therapy focuses on life skills (cooking, getting around your house, grocery shopping, etc.) and upper extremity movement.

In physical therapy, we started with sitting up. What a process just to get me sitting on the side of my bed! Once I was sitting, the therapist asked if I could sit here for 1 hour.

One hour?!? How about 1 minute?

After being on my back for so long, at this point we are going on 1 full week of not even sitting up coupled with weeks of bed rest, it is a very dizzying, strange feeling to sit up. Kind of a nauseous, lightheadedness is what it feels like. The only thing you want to do is lay back down.

She decided that we could sit up for 20 minutes instead. It still felt like forever!

The weirdest part for me as therapy began is the realization of the weight of my body parts. When you weigh yourself, and you see the number, say 100 pounds, you don’t think, “That could mean that each of my legs weighs 20ish pounds.” I’d never thought of my head as weighing any amount at all. I’m here to tell you it’s heavy!

The first few time sitting up I had to be reminded to hold my head up and look straight ahead. I just let it kind of dangle forward toward my chest.

The blessing now is that I have movement! Some of my muscles are beginning to respond which is great. No movement in my arm or hand yet, but that is going to take time, if it does come back at all.

The physical therapists wanted to get me walking as soon as possible. It took two therapists or Dan and a therapist on either side to hold me up and “walk.” It was more of a shuffle with heavy help for my human crutches. But, Praise the Lord, I was up out of bed.

Sensation

Maybe “Lack of “ should precede the title on this post.

I was totally oblivious to my lack of functioning in my physical body. As you can probably tell, my mind was keeping me plenty occupied!

The nurses and doctors would come by periodically and ask me to squeeze there hands with my fists or wiggle my toes. For a while, I just did what they asked without looking at my hands or toes while doing it. Thus I did not realize that there was no movement in my fingers, toes, leg, arm, anything on my left side. 

Notice in the previous post that I did not feel a squeezing sensation on my left leg. The squeezing was definitely there! I thought it was the blood pressure monitor, but they were squeezing my legs to encourage blood flow and prohibit blood clots.

The first thing I remember feeling is on my big toe on my left foot a tiny, distant prick when they squeezed my toe with pliers. Not gently mind you, I’m positive it would really hurt a normal person.

Doctor F. doesn’t know how much or if any movement will return. We will just have to take it one day at a time.

How I Knew I Was Alive

I forgot to tell you this!

Sometime in the process of waking up from the coma, I became aware of a squeezing sensation on my right calf. My first thought:

I’m still alive. I must have made it.

Scary Night

Now this wasn’t a scary time for me, like before, God had me wrapped in a blanket of peace. I more wondered what Dan and the doctor’s 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 up all day so Dan can 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.

One time, I wanted something, no idea 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.

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 question.”

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 out there.”

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 y turning my head, but looking just with the eyes didn’t work.

Dominican Republic 2010

Dan and I took a vacation with our friends, J and Andrea, down to the Dominican Republic this June. Before leaving, the weather reports were calling for rain every day so we were a tad concerned that the weather might be a big downer. It was SUPER humid all week, but it only rained twice for less than a half hour each time.

The resort has a lot of free outdoor activities that I've never seen at a resort before. I hear now that these are quite common, but they were new to us! There was kayaking, mini golf, basketball, tennis, shuffle board, chess, badminton, and volleyball. We attempted to play a round of mini golf, but the mosquitoes were to bad that we didn't even finish one hole. Andrea had 30 bites from that 5 minute excursion! Yikes!

Crabs

We only got pictures of the little guys. We were hoping to find some big ones. The locals said that after a hard rain, the big mommas come out. I guess our hardest rain wasn't enough to lure them from their hiding spots.

  Here's one in the hallway by our room.

This little guy was trying to hide, but we got him!

Me and You and You and Me

Day 1: Do we look white?

We look happy, but really I was freaking out thinking I'd fall. :)

 Us going to dinner on Thursday night. We got all gussied up that night.

The Beach

Doing what we did best: J, Andrea, and me = sleeping, Dan = being bored

That's the rest of them in the water. Those are my beautifully pedicured toes. I love vacation!

Flamingos

There was shallow pool for these cute guys. The stink though!

Aren't they cute? It's like a heart!

Friends

Waiting for a show to start...

Breakfast, Monday morning - the shine is from sunscreen...we practically bathed in the stuff!

Dan and J, same day...

So that is our vacation in a nutshell. I should have taken pictures of our 6 hour lay over + 3 hour delayed flight in Miami. I KNOW those would have been exciting photos!

Vacation is fun, but we are glad to be back state-side.

Hallucinations, part II

1. The wall and ceiling titles become scrolling white boards a night. I swear to you that there were kid drawings of houses and trees as well as writing all over the walls and ceilings. It was stationary during the day, but at night they scrolled either up and down or left to right. The panels on the walls were not symmetrical in size which added to the craziness. Now the ceiling tiles were covered in legible writing. I was convinced they were prayers for all the people in the hospital. I remember trying to read them, but I can’t remember any of that anymore.

One day, I tried to remember to ask my mom to let Grace bring her dry erase markers so she could write on my walls. I thought she would enjoy it, and I would like to look at her artwork after she left.

2. There is a little pump that was connected to my feeding tube that would pump water through the tube after every med was put into flush all the meds out of the tube. It would hum and whir for a couple minutes after the meds were put in. At night, I saw a web-like bubble come out of that machine. It would inflate as if the machine were blowing it up, and then slowly deflate when it stopped. I was just like a bubble in that it was translucent, and the only reason I could see it at night, was it reflected the orange glow on of the exit sign in the room.

3. Dreams: There were so many crazy, crazy dreams. The weirdest part was I knew I was dreaming. I would wake up to Dan or mom in my room, and they would tell me to go back to sleep and rest. I knew I was sleeping if I had a crazy dream. In fact, I would sometimes try to create a story or dream so that I would go back to sleep.

I’m a good girl, I do what I’m told!

#1 Flying through the clouds: I am afraid of heights, and none too fond of flying, but I was soaring through the deepest blue sky and puffiest white clouds without a care in the world. I was thoroughly enjoying the beauty of God’s creation. The bright sunlight in my face as well as the sun beams shining through the clouds.

#2 Creating my own movie: In my dreamy, haze I realized that drugged up people have WAY more creative capabilities that sober people. I decided that this must be why all of Hollywood and Nashville is on drugs and messed up. So I thought I should make up a movie storyline now, because I’m in a totally drugged, very creative state. Right?

Here’s my movie title: The Bionical Man of the Universe. Catchy, huh? I didn’t really make up a plot. All I got to was this Ironman-like main character. I’ve never even seen Ironman or Bicentennial Man, but I think that’s what I was going for.

#3 Strolling through the English countryside: Now, have I ever been to England? No. But I was sure that the lush rolling hills speckled with sheep and goats was England. There was a dirt road with a wood split-rail fence running along side it. I strolled (more light floated) along the road enjoying the scenery.

That’s all I can remember right now. Bummer, there were so many more.