In and Out

The title has nothing to do with the Squeeze Box song ;) - figure it out

Yesterday afternoon Laura was discharged from the hospital.  We had run the gauntlet of requirements, avoided sick kids and had back up upon back up for oxygen needs.  The work needed to leave the hospital was over may emotional day and in the end took its toll.  Given the events of traveling from UCSF to home, getting settled and a bath, Laura was spent.  Couple that with the concerns of not having immediate care a button away and what was to be a nice time at home became too much.  Laura could not recover from the exertion.  After a sleepless night and conversations with the hospital it was decided it was best to be re-admitted today.

This afternoon Laura we readmitted to UCSF and that is probably a good thing.  Laura had a chance to see E and Bear (our dog), take a bath and be home.  Even when you are not well home is where you want to be.  Given her health the next time she is home will be with new lungs.

To all of those going through this, coming home is a tough choice.  For those who do not live in the area, your choice is made.  For others that are close it is a tough one.  The thought of home is soothing, it warms the heart, it is where we want to be.  It is not as comforting at 2 a.m. or reassuring at 5 a.m.  For the care givers, you are on 24x7 call.  There is no nurse to check meds or pull meds from the refrigerator.  Everything is harder at home. Think about this choice.  The doctors

Though the last 24 hours was not idea it was nice.  E and Laura with Bear on the couch.  A funny story and a laugh between breaths.  Fractions of good in a stressful period but good.

So now we wait.  We race against the body.  Laura was more stable while in the hospital but it will still always be a decline.  She is losing weight ( a feeding tube is likely as it is so hard to eat and just burns more cals) and everyday everything is just so much harder.  She said,"the past few days have been so much harder than before".  We both thought we knew what this would be like but the speed is so much faster, it changes everything.

Thank you all again for everything.  Our block made paper flowers for her room as she can no longer have cut flowers. #teamlaura has hired Santa's crew to deliver, literally hundreds of packages of shirts.  The goal to provide all us of strength (out tribe)  and provide other some ease as they go through this, 

We know we are in the top few of the LAS (lung allocation score). This is a hard spot.  Our relief will come at someone else's lose. 

Again, thank you all.

Positive news to follow soon.
The Z's