Another big day

Like life you just want a day that does not have big highs or low lows.  Today was not a balanced day in the middle.

To start we now have an LAS of 74.  That is a big f@*#ing number.  That is good and means we are ready to go.  It also means Laura is really sick.

The morning encompassed all the doctors, and their teams, visiting about what will happen in the coming weeks if there is not a transplant. We are in a good place. 100% oxygen saturation, at 15 liters,  heart rate in the high 80s/low 90s...  Again we are trying to slow the decline. 

If we decline more rapidly they can increase oxygen to 25 liters outside ICU.  In ICU we can go to 50 liters. There is always the concern of desaturation and that is a sign that the lungs are not able to expel the Co2 .  If we hit this point then we start looking at a trach or the ECMO machine (Extracorporeal Membrane Oxygenation).  This is where they take the blood out of the body, scrub it for Co2, add oxygen, and pump it back in.  All in real time non-stop. We really do not want to get here.

After this conversation and a big nap on the BiPap machine the afternoon was better.  Good color, went for a walk on the floor (30 yards or so) had lunch. 

The late afternoon and early evening went back to shitty.  Given the work she needs to do to eat and recover, it was decided to go onto a feeding tube.  We discussed this with the team and everyone was on board.  The stress of eating, trying to managing calorie intact and actually recovering from the event of eating is taking too much energy.  A feeding tube will help all of this.

The tube is over 2.5feet long.  It goes through her nose, through her stomach and into the intestines.  The placed it with a machine that can follow the magnet at the end of the tube.  She was amazing when placing it but they did not place it far enough. She has been waiting to have this replace for 2 hours.  This really really sucks.  At 9:30 it was still not placed.

So that was our day.  Hope your day was a bit less emotional.  

Thanks to all who participated in the photo.  That was really great.  We do read the comments, txt and emails on all of them.  We (I) click like but would like to say more when time permits.

Next steps, beyond waiting, is to try to find a rental.  I did reach out to the family we rented from before.  Maybe we get lucky due to the new 30 day rental rule in SF.  Looking forward to another successful recover period in Cole Valley. 

Elon hasn't returned my request yet for a car with a sticker.  We will see. :)

Hope you are all well.  Thank you for the support.

Love,

The Z's