a year ago today

A year ago today I was still in the hospital at Mayo Clinic.  This was a very hard day.  I was finally somewhat coherent and my oldest son and my mom had been visiting me and this is the day that they had to leave.  My husband had been there almost all of the time before this but I do not remember that so this was huge for me

I had obviously gone in for major surgery and knew the risks, but waking up to find yourself with too many tubes to count, a tube in your nose, a tracheostomy in your neck and reaching to your sides and abdomen and only feeling more tubes and drains and dressings, even in an altered state of mind you know that things did not go the way that they had planned.

I began to fully understand this during the time that my mom and son were there.  I was scared and of course only wanted to be home.  My mind was half there and half gone.  I tried to text/call people but couldn’t.  I felt like I needed to leave but couldn’t get up by myself.  This is when I really remember panic attacks setting in.  I know I had some before this time but these are ones that I remember.

Being alone, sick and scared with my family almost 10 hours away…not being able to use my phone because of the drugs I was on and feeling like I was going to die.  Having a tracheotomy is a terrible feeling, at least for me.  I’m sure it doesn’t sound like a picnic to anyone but the reality of having one and the sensations it causes and the care required are something I had no real knowledge of.

The first thing is that it attaches to a “collar” that goes around your neck to help keep it in place and from pulling on the sutures.  All I knew is that I wanted it OFF.  I felt like I was choking and kept trying to get it off.  I had a nurse with me 24/7 so luckily I was never successful.

Then the sensation of drowning.  My lungs were full of mucus, infection, fluid…junk and I would start to feel like I was losing my airway and the nurse or respiratory therapist has to suction out the trachea.  The tube they used for this was relatively small and just looking at you would think it was not a big deal.  The thing is, they thread that tube WAY down there and it causes the most horrible painful cough that I have ever had and hope to never have again.  The relief after the suctioning was great because I no longer felt like I was gurgling and drowning but again all in all, that was hell.

Then there are different caps for this that let you breathe on your own, talk on your own, or totally close it to where you cannot speak at all.  Basically it was a big scary pain in my ass the whole time.

As I was getting more coherent I started asking when I could come home, could I be transferred to a facility that was closer to my home so I wasn’t away from my family.  My husband and daughter came up to visit shortly after that and we had a meeting with a physician and discussed my long term care……I was not planning for long term care.  In my mind I was still just gonna get up and go home in the near future.  Plus I slept through half the meeting and remember hearing things like nursing home and physical therapy, etc.

At this point I was able to get out of my bed with nurse assistance and use a walker with two assistants and could walk from my bed to the door of my room and maybe 10 steps further.  Then I would have to sit and take a break and walk back.  For me that was a full blown marathon.  I’m not gonna lie, I hated it.  Getting out of that bed is one of the hardest things that I have ever done.  And excruciatingly painful even with all the drugs.

The depths of coming from a month of sedation/coma back into reality was such a dark place for me.  The confusion, panic and just general fear that I felt is a feeling that I don’t know if I will ever fully recover from.  But I will keep trying.

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