Comas Come With Gifts: A Case of Misdiagnosis Continued

septic shock2

“Six Feet Under” was on and before the coma it had been one of my favorite shows, but now I was having a hard time looking at the screen.  There was a body on the gurney and tubes were draining the blood from it while others replaced the blood with, I assume, formaldehyde.  Our children were asleep in their bedrooms, probably dreaming about their birthdays that were just a few days away.  Our daughter would be turning eleven and our son would be turning six.  The show ended and my husband kissed me goodnight and went to bed, he had work in the morning.

I was filled with an eerie feeling and couldn’t bring myself to close my eyes just yet.  The house was quiet and dark now, except for the one light in the room.  For a moment, I wondered if I was really alive.  Maybe I was a ghost, sitting in the living room of my house, watching over my family as they slept.  A chill ran through me.  I sat there for a long time, thinking about the past week.

A week ago, I awoke from a coma.  The first thing that I saw, was my husband’s face.  He was unshaven with several days of beard growth and he looked worried.  My first thought was that he must be worried about work.  I thought he must be missing work because I’m in the hospital and maybe the office is giving him a hard time about it.  For me, this was a natural thought because at this stage of our lives, with two growing children, our marriage had taken a turn.  He spent most of his time at work, working up the corporate ladder, trying to provide for his family in a difficult economy.  He had a mortgage to pay and family expenses, while I had chosen to be a stay-at-home mom.  On the other hand, I was consumed by my children and their lives.  I was their PTA president, I was my daughter’s Girl Scout leader, but most of all, I was their mom.  I didn’t even consider that the worried look on his face was for me.  I think that speaks volumes.

There were tubes coming our of my nose and there were tubes stuck into the side of my neck.  I felt confused and frightened.  I remembered that I went into the hospital and that the doctor said they were going to do laproscopic surgery to find out if my appendix was infected.  They also had said that if they couldn’t determine what was wrong through laproscopic surgery, then they would open me up and do exploratory surgery.  So I assumed I was now waking up after surgery . . . but I wasn’t.

My husband was saying something so I tried to focus on his words.  “You’re a bull!  You are so strong!”  I didn’t feel strong, I felt very weak.  “This is the best birthday present you could ever give me!”  He was smiling now, he was very excited and his face was very animated.  I was trying to figure it out but it didn’t make sense.  “You’ve been in a coma and on a respirator.  They tried to take you off of the respirator yesterday, but they couldn’t.  They said you might be on it for another week, but today your numbers were better and they were able to take you off!  Yesterday was my 40th birthday . . .you’re breathing!”

That night, I spent my first night in the I.C.U. awake.  The I.C.U. is not a place you want to be awake in, it’s better to be in a coma in the I.C.U. at night.  There was a storm and the staff was short on nurses.  My nurse, John, told me he had three patients including me.  I was in isolation because they didn’t want me to be exposed to any other infections and, I suppose, they didn’t want anyone else exposed to mine.  I had Streptococcus, Type A, in my blood system and  it had put me into septic shock.  When they had finished the surgery, they had found infection throughout my body cavity.  They washed out my organs and left the incision open in case they had to “go back in.”  So now, between the open incision and all the tubes, I couldn’t really move.  John came in to change the fluids that were being pumped into my neck.  He wasn’t wearing gloves, so I asked him, “Aren’t you supposed to be wearing gloves?”  He was annoyed by my question and replied, “I don’t have time for gloves.”  That scared me, but what could I say?  I certainly didn’t want to get him mad at me, since without him, I was probably going to die.  So I didn’t say anything else.

I tried to fall asleep, and I suppose that I did.  I remember floating in a hallway or a tunnel.  There was a ceiling of some sort above me and I was flying.  There were children under me all along the “hall” and they were laughing and playing and pointing up at me.  There were colors swirling around me, purple and gold.  I remembered somewhere in my brain that purple and gold were the colors of my children’s elementary school.  There was a light at the end of the “hall” and I was flying toward it.  But then I woke up.

In the I.C.U., patients are hooked up to machines that send out automated voice warnings to indicate that something is wrong.  I later found this out and that they say something about “reset.”  But that night, I didn’t know that.  I heard this voice and I thought it was saying, “Theresa is dying.  Theresa is dying. Theresa is dead.”  (Reset sort of sounds like Theresa, so maybe that was what I was actually hearing.)  Morning was coming when I saw a red button on the wall opposite me.  In my mind I thought I had to press that button to get help or else I was going to die.  I thought about my children and I knew that I would do anything to live for them.  But I couldn’t get to that button without pulling out the tubes.  I didn’t know that the drugs that I was on for the pain were causing me to hallucinate.   So I yanked at the tubes that were going into my nose and down my throat to my lungs.  They had been there to administer oxygen to my lungs to help them work.  When I pulled those tubes out, my machines went haywire!  Nurses came running through the door.  After that, they just gave me an oxygen mask.

There was a nice nurse during the day and she spent time letting me talk to her.  She took the patch off of me that was causing my hallucinations.  She had a young child of her own and she understood how I was feeling. Everyone kept telling me that I was lucky to be alive but that I “wasn’t out of the woods yet.”  I had a devastating bacterial infection that had an 80% mortality rate.   It was early 2002 and no matter how much I wanted to get well and go home to my children, I didn’t feel worthy of it.  Only a few months before, I had put my Kindergarten son on a bus to go to school on a beautiful clear September morning.  I had then walked into my house to see an image on the television of a tower burning.  Then I watched as a second plane hit the second tower.  In the days that followed, I found out that three fathers from our neighborhood had died in that attack.  Thousands of parents died in that attack.  Parents who deserved to go home to their children who needed them.  Why should I get to go home?  A nun came in to talk to me since it was a Catholic hospital and I was catholic.  (There’s another funny story in there that I will tell, quickly.  When they were getting ready to take me into the operating room, a nun came up to me to pray over me.  I thought she was giving me last rights, so I yelled at her and threw her out of the room.  I have a sister-in-law who thought that was really funny and when I did finally get flowers from her — no flowers allowed  in the I.C.U. — the card said, “Don’t throw any more nuns out of your room.”)  Well, anyway, this nun (who may have been the same one????) was really nice too and she and I prayed to St. Therese, the little flower, to help me.

I spent lots of time crying and just not feeling worthy.  I spent the next few days in the I.C.U., the nights were still scary, but the days weren’t too bad.  It was hard that I couldn’t talk to my daughter because there wasn’t a  phone in the room.  (No phones in the I.C.U. either and this was a time before cell phones.)  I knew she would be worried.  She was old enough to know that something was really wrong.  I had been with her every day of her life and now I was just gone.  They told her I had my appendix out and that was why I was in the hospital.  I knew she had to know better than that, and she did.  She knew they were lying to her and she was worried.  The nurses agreed to let her come up to see me for just a few minutes.  This was against the regulations since she was under twelve.  But they let her come up anyway.  I was sitting in a chair now and I no longer had the oxygen mask but there were still tubes sticking out of my neck.  As scary as I must have looked to her, she smiled when she saw me.  She finally had proof that I wasn’t dead.  Those were precious minutes.

A few days later, I walked past the nurses’ desk with the help of physical therapist, they all stopped talking and were watching me.  I asked them what was wrong, they said they don’t see patients who were as sick as I was get up and walk down the hall a few days later.  They had all thought I was going to die.  They moved me to the cardiac floor after that.  The nurses on the cardiac floor have many patients, so it was time for me to do things on my own.  This meant getting out of bed and using the bathroom without help.  Not an easy thing when I still had a vertical open incision across my stomach.  But I was as determined as ever to get home to my kids and unless the doctors had proof that my kidneys were working again, I wasn’t going to get to go home.  The first morning that I woke up on the cardiac floor, I opened my eyes to see a familiar woman standing in front of me.  It was my grandmother.  But my grandmother had died over thirty years ago and when she had died, she didn’t have her legs.  She had had diabetes and had stubbed her toe.  That had turned to gangrene and her foot and then her leg was amputated.   Then the gangrene spread to the other leg and they had cut that one off too.  So to see her “standing” in front of me was a bit shocking.  She didn’t say anything, she just stood there.  I closed my eyes and said (maybe out loud?) “Don’t take me now!”  I opened my eyes and she was gone.  I knew then why I was alive.  There were things I had to do.  My grandmother had divided her nine children through her actions, and I was going to try to unite those who were left, and the grandchildren who never had a chance to get to know each other.  That summer, I held a reunion, and there were many stories and tears shared.

But back to the hospital.  You can get flowers on the cardiac floor.  While my nun was there talking to me, the first bouquet of flowers arrived.  It was from my children’s school.  In the middle of the flowers, was one red rose.  The nun told me, “Look at this!  St. Therese answered your prayers.  She always answers with roses and here there is one single rose to make sure you know she heard you.”  Later that day, I received a call from the principal’s secretary.  She was crying on the phone.  She said, “We were so worried about you! Get well and come back!  We love you.”  Now that alone is very nice, but you see I had just spent a year and a half as President of the PTA and during that year (please read the post, “Sticks and Stones (Reposted)” for the details), my life had been a living hell as PTA President.  So for those flowers to be the first ones I received, and to hear the secretary tell me that I was loved, was a true gift.

When I did finally get to go home a few days later, I still had an open incision that was left to close on it’s own.  I was still feeling weak and still feeling like I didn’t deserve to live.  There was a knock on the door and there was a delivery man with flowers.  Then there was another knock on the door and there was a delivery man with a basket.  This happened all day.  Then the mail came and there were cards from everyone.  Friends started stopping by and telling me that they were happy I was alive.  Finally, a neighbor stopped by.  She held a schedule in her hands.  The PTA moms had volunteered to cook dinner for my family every night for months to come.  I was overwhelmed.

That night, when we were alone, my husband cried.  He told me how scared he was.  He told me that he didn’t know how he could tell our children that I wasn’t coming home.  He told me how much he loved me and I realized how much I loved him.  Not just because we are the parents of our children, but because we love each other, for each other.

So now I sit in my living room, a week after awaking from a coma, while my family sleeps.  I am a ghost in my own house.  I have been present at my own funeral.  I have found out that I am loved and appreciated and yet I still don’t feel worthy.  So I make a promise to God.  I tell him, “I know you saved me for some reason and I don’t know what that is.”  I think about St. Therese who was known for the little things she did, she never did anything grand in her life, they were just little things.”  So I say to God, “I will just try to keep my eyes open so that I can see those little things that you put in front of me and I will do my best.”

(That night was thirteen years go – Early February 2002.   I’m still here, still keeping my promise, and still looking for those things, God.  So keep them coming and thank you for giving me these cherished years to see my children grow-up.)

http://www.theresadodaro.com   Author of The Tin Box Trilogy

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