Indirect Calorimetry

It was another stable day for Owen. We didn't make any changes. We sent of plenty of labs this morning and everything looks rock solid.  He's still neutropenic but we stopped his Cellcept so we should see the effect of that soon.  We increased his Coumadin to 9mgs a day which is insane.. we just can't get him to goal of 2-3.  He is still on Plavix, Asprin, Coumadin and Lovenox... and we watch each level carefully to make sure he stays therapeutic without overdoing it.  Owen asks every morning in rounds what his INR is so he can be done with Lovenox injections soon.  It's inching up to his goal.

The team ordered an Indirect Calorimetry test with Pumonology.  It calculates how much energy he exerts while at rest so we can get an individualized caloric goal for him  I really wanted to try it out, but I don't think I want to know how few calories I burn at rest.  I'm curious to hear what the final report on Owen reads.  Owen was skeptical of the bubble so I may have bribed him a bit and he actually liked it.

Janesa and her boyfriend came by this morning to visit on their way to Big Sur.  Janesa made me super yummy and healthy meals to eat all weekend.  Owen's Psychologist came by and taught him how to play "Trash" with playing cards.  He then taught Janesa and he has a new favorite game. 

It has been a good day and we are hoping for a stable weekend.  I looked up the data on OPTN and Owen is the only kiddo listed age (6-10) that has B(+) blood type in the entire nation as status 1A.  This data was updated as of June 17th when Owen was relisted as 1A.  Obviously things change and we can only take a heart that is no more than 2-3 hrs away.  I pray often for Owen's new heart.  That a grieving family will say YES to Organ Donation.  That Aly's family will know how much we love and appreciate the gift they gave us for the past three years.  Aly's heart has carried Owen through ECMO, Cardiac Arrest, Biopsy Neg Rejection and severe coronary artery disease.  I know he has a guardian Angel watching over him all the time.  It's all in God's timing and I am trusting that.

My kiddos made it home from the Lake safely.  They had a really great time and I am so grateful they are so well cared for.  Life is good. 

Here's hoping for a quiet weekend.