Monday, October 1, 2012

Day +236

Tomorrow we head back to CHLA.  The BMT team wanted Timothy to get a consult with their pulmonary team.  The fact that Timothy’s still on steroids for his lungs is a mystery to the doctors.  He didn’t have any lung issues prior to the transplant… no asthma, no fungal lung infections (common to CGD patients), no pneumonia…nothing.  But each time Timothy was weaned off, his lungs had issues.  He starts laboring to breath and his oxygenation gets low.  The first time around there was fluid build up, but the second time around it was unidentified mass like blotch on the CT.  I am sure I am not doing justice to the medical terms in explaining Timothy’s condition.  So we’ll see what the pulmonologist says tomorrow.  He is too young for a lung function test.  It will most likely be just a consult.  Please pray for his lungs… Thank you.
On a side note, look what I have found:
His Grace Foundation
It’s a bit strange seeing Timothy’s face and our family on a website :).


  1. We are dealing with lung issues over here too. Not fun. I am not sure if your hospital does this or not, but there is a way to do lung testing on younger kids. I think it's called infant pulmonary function test. It requires sedation, but worth looking into I think. Prayers for healthy lungs!!

    1. Thanks for the info! Will look into it for sure. By the way C looks great! Can't believe he's attending school doing so many 'normal' things! So awesome :)