“I got a LIVERRRRRRR”

This woman is shouting it from the rooftops. To go from total sedation yesterday to telling it to every single person that steps foot in her room, wild turn around, couldn’t love it more.

This morning they extubated Mom (removed her breathing tube) and she was able to breathe on her own and take her first few sips of water without the restraint she previously had to have.

For over 2 years now Mom has been on a fluid restriction of 1.5L a day… to give you an idea, that is 3 poland spring water bottles. Beth, the friggin’ camel, was limited to 3 bottles a day of total fluid intake. So, when asked what she was most looking forward to about her transplant, she has said DRINKING WATER.

I hope that first sip tasted like a glacier from a magical rainforest in a mythical green haven somewhere and watching her eat ice chips since, it very much seems like it is.

So far we have met with a plethora of doctors and members from the transplant team. Mt.Sinai has made this experience feel like our least stressful hospital experience yet. Al, Ry, and I have become local regulars (celebrities if you will) at Motown’s Hospital and pretty much hold the unit down when Mom gets stuck there. No, but in all seriousness, anything to ease the burden of the nursing staff on the floor is our goal at all times. Whether that’s by getting Mom water, helping her to the bathroom, helping feed a roommate, you name it. Nurses are overworked, underpaid, and generally understaffed. We try our best to maintain the balance of being an excellent patient advocate, never stepping on toes, or crossing boundaries but always providing assistance in anyway possible to those around us.

Here, at Mt.Sinai, they have a guy for everything. One alarm bell goes off, the charge nurse comes, it’s actually insane and I love it. We are all so used to doing so much that this is the first time stepping back and it’s truly amazing to watch this transplant team perform.

So far today she has had OT, the catheter/main arterial line from her neck was removed, she can fully breathe on her own but the largest change this week: her attitude.

I have never seen her so damn happy.

The one continuous comment we keep getting from every staff member is how positive she has been since 4am on 3/31 and continues to be.

Before going into surgery we had a really real sit down as a family because depression and anxiety were starting to get the best of her after keeping up a brave front for so long.

For obvious reasons having your life on literal pause for 3 years from being so sick is awful but then the anxiety of being on a list with no time or idea of when you will be called while gradually getting sicker each day drives all those bad vibes home. Those that know me know that I do not hold back from the truth at all and if I need someone to know something and need them to understand it, I will say it in the most direct way possible. So, during our family meeting I had to do just that.

Our path towards positivity was a simple statement out of my mouth: “You will die on the table if you truly believe you have nothing to live for and continue to be pessimistic.”

Firm believer in optimism over here—also definitely the ‘mean’ daughter—and the best way I know how to communicate is being straight forward. And what I said was the simple truth; walking around with no will to live, then getting the call, and going in with these deep dark feelings will kill you, so start trying to hype yourself because the end result is irreversible. Your mind over matter is so strong. So when we got that call, I saw those wheels finally turning.

Getting wheeled down to the OR, her first smile.

Her first joke.

Her first laugh.

The OR nurse commenting on how positive she was and how she loved it.

Then the Medical Student observing from Brazil making the same comment and the Surgical Resident from Texas, all applauding how happy she was and how surprised they were at her optimism.

The first thing she did when she gets her tube taken out this morning, smile.

Though she still remains in the TICU, we are hoping to move to the ICU’s step down unit tomorrow.

Beth is sooooooo back yall.

She’s even bitching about the tv already!

Xoxo

nell

(Al and I waking up this morning in hopes it was EXUBATION DAY!)