4/22 The Waiting Game Again

I can’t imagine anyone looks forward to three abdominal surgeries in a short amount of time.  But, to be honest, Logan and I saw this as real potential and I’m  ready.

Yesterday (Monday), they installed a feeding tube – once it was in I heard the doctor say, ‘Ok now for Tube Pizza” – but I was so wrong.  It’s a slow drip of a mix of ingredients down to my stomach.  I don’t know how those circus performers put a noodle down their nose and out their throat, because it is not pleasant.  I told Logan that  I was like a pachyderm – a new snout for feeding me yummy things.  It was the only thing to keep me from feeling it was inhumane and unspringing me completely.  I did cry to the doctors and told them I needed a few minutes before I was ready.  Mom was there to comfort me in those few minutes.  I understood the reason – I was not eating or drinking those super-sugary Ensure protein drinks.  I maxed out at 2 ensures, and 2 six-packs of peanut butter crakers in one day.  That’s not going to grow a liver.  Now my feeding tube is giving me 1400 calories and 100 grams of protein.  If I feel like supplementing, they encourage it. I didn’t sleep Monday night at all.  Hospital beds, along with the soreness and pain of surgery, and constant drip of feeding tubes does not work.Today, they failed to recognize that taking 15 dry and sticky pills with a feeding tube is a recipe for disaster.  Only after I told them the horrid act did they realize the pills should have been crushed or given in liquid form. Needless to say, I felt a little unpleasant.  I told the nurse my pain was at 10 – “WHAT?!” and then explained I wanted to just sleep and not worry about a thing.  She did what she needed to do.

Dr. Pomposelli came around this afternoon and said nothing was in the works, so probably not happening today or tonight.  The organ harvesting process is something I did research on when first put on the transplant list, and may explain in detail better.  But, right now it looks like it’s a literal day-to-day wait.

I have seen what it’s like to operate with a new liver for a few days, and a worse liver more recently.  Still, it’s in a remarkably peppy body.  Pre-transplant, by resting heart rate was medicated at 60bpm.  Now my resting heart rate is at ~103bpm.  It’s a whole different ballgame.  I have a hard time sleeping, am out of breath a lot, but am super amped most of the time.  I’ve been trying to relearn how to work the heart rate – making it quiet when it’s rest, and not firing it up to racing speed when I’m just talking on the phone.

G’night Logan, G’night moon, and G’night all.