Josie and Numbers, Numbers, Numbers

This is the post I have been trying to write for a week or more.

We finally got to touch base with Josie's cardiologist/PH specialist at Stanford on the results of her heart tests in January.

Managing Josie's heart and lung disease is an exercise in numbers - and we found out a few new things from Dr Feinstein.

The summary:

Josie's pressures in the vessels between the heart and lungs actually have come down.  She is still in the severe range, but it seems some healing has happened for her.  Yea!  We did not realize that.   How much more she can heal is not known, but the current thought is that she will always deal with this to some degree.

On the other hand - neither side of her heart is doing a good job on the relax part of the beat.  There is no physical reason for this they can find - it seems to be a left over from years of accommodating a funky heart anatomy.  They expect it will get better over time, but never be completely normal.  So we get to add more medications.  Boo!

The numbers . . .

We did a six minute walk test as well and found that her O2 sats drop a lot during a long brisk walk. She walked 1050 yards and her O2 sats dropped from 96% to 70% (and she kept walking and smiling which is amazing).  She recovered back to 92 in 2 minutes - which is pretty darn good.

one of the key measures is PVR - pulmonary vascular resistance.

Normal is 2 to 3 or so.

Before Josie's operation this was estimated at 4.9.  I say estimated because her heart configuration made accurate measurement impossible.  This was high enough for her to be considered inoperable by most heart centers.

• At the time of her heart correction it was realize Josie's pressures were actually 12.   No wonder recovery took a while.
• At her second heart cath the pressures were 10.
• At this one her pressures were 8-8.5.  With oxygen and nitric oxide they were 6.

So better, but her heart still works really really hard.

And - the pressures in the right ventricle have dropped as well.  They were systemic- same on right and left side of heart.  The right side is now showing pressures a bit less (3/4 systemic, .9 ratio) than the left.  That is a good sign.

Josie sort of runs a marathon every day.  And smiles as she does so.

Right now we are having a heck of a time (again) with serious allergic flairs all over Josie's body.  She got a virus and her immune system basically went nuts.  As you can imagine this is not real comfortable and we have to watch or she will scratch herself raw.

So - kind thoughts and prayers please for continued (and faster) improvement, and for us to figure out how to keep her skin and immune system calmed down.  It is my personal goal to shock and surprise the docs one day with Josie's complete healing!

Sometimes I worry about Josie - then I remember all God has done for her and how far she has come in spite of it all.

I remember when I wandered the halls of Lucille Packard Children s Hospital waiting for her to heal enough to come home.  They had a continuous loop video of soothing scenes showing on a screen next to the main elevator bank on each floor.  Every time I saw it I would think of Psalms 23 - yea though I walk through the Valley of the Shadow of Death I will fear no evil, for you are with me. . .

I am so thankful for all who have stood with us through these 2 years of ups and downs.  It means so much to us to have your support and care.