Day 6

Today Everett and I had a discussion on how long Laura had been in the hospital.  The days roll on and blend together.  It is like a cruise minus the fun, food, entertainment and floor mats in the elevator that tell you that it is Monday morning or Wednesday evening. It is only Day 6.

Day 6  was another long day.  Laura is attached to a med pole with 3 IVs, saline and other drips depending on the day.  All those hook into different regulating machines that manage the flow.  They  beep consistently, stop and beep more, all becoming a general annoyance.  The yards of tubing do not make anything easier and again become a point of contention.  Nothing is simple.  Nothing is easy. Everything must be done with others.  All the small things that fray the nerves every day.

We are trying to make a push to get home.  This is going to be a push for a couple of reasons and the first is related to the DVT blood clot in her calf.  They must thin the blood to remedy this for the obvious reasons. There are two forms of blood thinners that are reversible for transplant patients.  The key is Coumadin.  When we do receive the call for a transplant they can give Laura a drug that will reverse the effects almost immediately.  Most others thinners do not react this way. 

For Coumadin to work they need to attain a certain level in her blood.  Thus far her body is not allowing that level to be achieved.  She is on IV Heparin, and that is helping in the short term, but she can not go on on IV Heparin.  The Coumadin levels are the first key to a release.

The second requirement is her current need for high volume oxygen.  Given the condition of her lungs, any task requires a lengthy recuperation period.  This high volume oxygen diminishes the time needed to recover.  Recovery then requires less energy which requires less food.  Her appetite is gone and the meds to increase that are only so effective.  W

The issue becomes high volume oxygen is not available outside the hospital. If Laura can't operate without that is another barrier to exit. We are making strides on this one. Her recovery times are longer than wanted off high flow, here oxygen saturation levels are good without.  Some little progress.

Throughout all of this the team at UCSF is awesome and we appreciate all they do daily. They are number one for many reasons.

Friends and family have been great distractions.  We are behind on calls. texts and emails but I would image everyone understands.  Thank you for all the notes, text, emails...etc.

The founders of #teamlaura have been amazing.  The funds will go to great use.  We have met others in our situation that struggle to make ends meet. We were able to help some last time and look forward to helping more families in the future.  We have wanted to start a foundation post to the first transplant and this is the start albeit a bit later than planned.  Thank you.

Going forward we are really in a waiting game. In the last week Laura's Lung Allocation Score (LAS) reached 57.  At the time of last transplant she was at 60.  We are in the game and hoping we receive a call sooner than later.

Again, thank you all.

Love, The Z's