Real memories….

I am not sure what day I actually woke up and began to remember things.  Fortunately, my family has been able to help me remember and piece some things together.

Hellish memories…having an NG tube in your nose and sewn through your septum to keep in place and being so drugged that you cannot help yourself and try to pull it out yourself.  Waking up with a tracheostomy and not being able to understand what had happened and being terrified and unable to speak and too drugged to write legibly.  Tubes, IV’s, PICC line, catheters, etc….unimaginable.

Tracheostomy/ventilator memories.  Feeling like I was drowning in my own mucus was a feeling that I felt frequently.  I can remember banging on the side of my bed and trying to express to my nurse that I needed to be suctioned.  Helpless in every way possible.  Desperately needing to be suctioned and not wanting it because even though it provided relief it was horrible each time.  They thread a tube down your trach tube to suction out lungs.  It caused me to cough like I have never coughed before or since.  Excrutiating…

I ended up being a patient for 43 days.  43 days that I mostly lost.  My husband stayed with me until after the 4th surgery and he had to go back home to Kansas and his job and our kids.  I do not remember him leaving, but I do remember waking up alone.  I remember nurses putting the phone to my ear and hearing my families voices but not being able to talk.  Tears streaming down my face many days as I struggled to communicate my needs and wants to people.

My mom and son came to visit me for a period of time over the 4th of July holiday.  I do have some memories from their visit….finally.  I had the scariest night that I remember while they were visiting.  I spiked a fever and my pain level was becoming uncontrollable and even with the ventilator I remember it being very difficult to breathe.  They called for my mom and son to come back to the hospital during the night.  I was taken to CT scan with a LOT of people as well as mom and my son.  I knew that I was going to die that night.  The only thing that I wanted was to make sure everyone else was going to be ok.  I did actually talk to my son’s best friend and told him I wasn’t going to be coming home and I needed him to make sure my son was OK.  Had I been in my right mind I would not have done that in the presence of my son or ask that of his friend but of his parents.  I knew that my husband would be there but knew he would also be devastated.  It was determined that I had an empyema in my right lung.  More chest tubes were placed and more antibiotics were started.  It was awful.

I had finally gotten my cell phone back and was trying to call 911 as I thought I needed help.  I texted nonsense endlessly to my mom and son when they were at the hotel.  I made my hand like a gun and pointed it at my head trying to tell the nurse I couldn’t take anymore.  She asked me if I wanted to die…I shook my head yes.  I was praying that God would just take me.  I was scared but mostly I was just tired.  Tired of hurting, being frightened, unable to even scoot myself up in my own bed.  I had to be pulled up in my bed by a draw sheet that was placed under me.  Physical therapy came in and tried to help move my arms and legs as I was quickly losing strength and muscle.

At this point I could talk sometimes…..there are apparently different valves and caps when you have a tracheostomy.  If I was capped or inflated I could make no noise or speak at all.  I had a speaking valve that if they attached I had the ability to speak.  The nights were the worst times for me.  At “bedtime” they capped the trach….no speaking and I felt like I was suffocating.  Anxiety was through the roof.  As much as I hated the suction I will admit that I sometimes motioned to be suctioned just to get that trach uncapped for a few moments.

Strict NPO : Nothing by mouth, even a sip of water, even a chip of ice.  NOTHING.  I was being fed through my J tube which eventually clogged and failed.  I developed an anastomotic leak, which is the site where they joined the esophagus and small bowel.  This meant I had to be on total bowel rest.  I was on total parenteral nutrition (TPN) which is being fed strictly by IV.  I had a huge IV bag full of a white milky fluid they called my steak and potatoes and another huge bag of yellow fluid they called my butter bag.  I honestly did not miss eating or even think about eating but if I had the strength I would have fought to my death for an ice chip.

My weeks after my mom and son left were long, hard and scary.  My husband came every single weekend driving 10 hours each way to be with me.  He had to go back to work but did not miss a weekend with me.  He drove all that way…I mostly slept, bitched or cried and begged for him to please, please take me home.  Not a lot of shining moments for me during this time.


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