Last Full Day in the Hospital

With the trauma of my last IV placement over, I could concentrate on rest and therapy as I prepared to leave the hospital. Dan and I had discussed our options with the doctors, and all parties involved believed that Mary Free Bed was the best place for me for the next phase of recovery.

To recap, I had awoken from a medically induced coma about 3 days ago. “Waking up” is a gradual process which is why I had all the crazy dreams and hallucinations. I have no movement on the left side of my body and little to no sensation. If the nurse inflicted pain on my toes, I could feel a very distant, light pin-prick. I was doing physical, occupational therapy from in-hospital staff. The sessions were about 20-30 minutes long, and I was exhausted after each one.

Since I was not able to walk or even sit up on my own yet, I needed to go to an in-patient rehabilitation program with full time nurse care. At this point, my surgeon has no idea what if any feeling and/or movement will return. The brain is a very complex organ, and when it has undergone this type of trauma, it is not easy to predict how much it will recover.

During my waking up process, my mom shared with me that there was a girl with an AVM also in the hospital. She was in critical condition as her AVM did not stop bleeding on it’s own and the healing process was hampered due to seizures.

Even though I did not want to do anything except lay in bed, I want to go encourage her. I will never forget the feeling of going into that hospital room with that sweet girl in the bed. Tears welled in my eyes as I took her hand and began to read her a passage from Psalms 139:

For you created my inmost being;
   you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.

This passage, along with many other psalms, had brought great comfort to Dan and me in the weeks leading up to surgery. They say you can hear when you are in a coma, and if that’s true, I wanted to try to bring some comfort to her.

It is deeply comforting to me to know that not only is God in control of how my body was created, but he did it on purpose. He knew I’d be going through this time in the hospital of pain and uncertainty about the future when I was still in my mom’s womb.

Of all the things that have run through my mind through this experience, the one thing that keeps coming back is that God spared me for a reason. I am his vessel, and I want him to use me for his glory. I don’t know if my story can bring someone else comfort or bring them closer to Jesus, but I hope with all my heart that it can.

Aside finished, I read that passage to Brenna through thick tears. I told her to keep fighting, and that she could do it!

It was an emotion filled afternoon. Fast forward to today; Brenna has not recovered like I have. If you have a minute, please send up a prayer on her behalf.

Next up for me is to remove the staples from my head and go to Mary Free Bed tomorrow, Friday, December 11.

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.