Reflections of a Temporary Homecoming

On Friday I was told if everything stays stable, I needed a PICC line installed Monday (They dont "do those" on the weekend) and be sent home Monday. 

Within 12 hours of this happening, my body threw a loop. 

99.6 temp type of loop.

I panicked. Full Panic. Not the type of panic attack that makes you scared, but full blown loss of hope, angry panic.

The nurses tried calming me down, saying it could be a fluke, lowering the AC in my room to a more normal temperature as it was warm in there, and we would see what the next vitals reading would be.

2 hours never took so long. I wanted to go on full rage and throw things against the wall. No matter what anyone tells you, "take it one day at a time" or "you're in the right place, better you have a fever here than at home", when you're THAT close to progressing forward in your treatment and there is potential setback, the room you've been in all week transforms into a 12 x 12 cell, and you feel like a trapped prisoner.

That's where I was for a few hours last night.

They came in twice more for vitals that night, both times temp was 98.6

This AM once more? 98.6.

This means I was good to go for my PICC insertion/procedure, to allow for IV antibiotic treatment to continue while at home, and cleared to progress and receive a new tentative transplant date.

Both were very important to me.

The insertion of the PICC sucked, but it's over and it's a step in the process I needed to do. When there are no options, you accept your fate and make the best of it. I closed my eyes, and let them just deal with whatever it is they needed to do. 

I was done.

I had done it.

Alone.

Alone is a BIG factor in hospitals. I'm not used to ALONE in general, but ALONE in the hospital? It plays mind games on you. I want to hope my mindset will be different next time I go in since it hopefully wont be emergent and I will be following a plan to get better, but - there are no guarantees.

I still hope.

And Alone still stinks.

I'm very lucky Rachel can visit for a couple hours a day, but for the most part, all my tests/procedures/treatments  -  I do them alone. 

I don't care who you are, Alone makes you lonely. (Duh).

And loneliness leads to depression. And it's dark in there.

But today there is light.

Today things worked out for the most part.

My numbers stayed well enough for me to be discharged home and so here I sit, updating you from my house after spending the 2 of the last 3 weeks in the hospital. 

So - HOW DO YOU FEEL?

To say mixed emotions would be the understatement of the century. I was becoming antsy in the hospital, no doubt, but coming home? What if this happens again? What if I miss a sign?!

I was told my recent bout with sepsis had nothing to do with poor hygiene or something I did wrong. My body essentially infected itself and with no immune system - it was downhill from there. 

I asked what I could be doing differently AT HOME this time, and was told nothing.

I was told they (My team) were doing things differently for me while at home to keep my immune system healthy and keep bacteria OUT. 

I missed my wife and kids terribly.

I missed freedom terribly.

But to the same degree, I am hopeful my new transplant date gets scheduled expeditiously so I can finally begin the next step in my healing process. I know it will be hard. I know I will grow restless again, but I also know it's a means to an end.

I still cannot believe the amount of support from family, community and friends.

it's overwhelming to a point that brings me to tears. And we'll forever be grateful.

Right now the next steps are having an agency come to the house tomorrow to show me how to use my IV antibiotics and a checkup with the hematology group on Wednesday.

Broadcasting live from my dining room table (For now).

Thanks for reading.