Thursday, April 16, 2015

Worsening CXR and overview - updated

Thank you for your prayers; Ava continues to need them.

Her chest X-ray this morning (around 4am) looks worse than before. It's a mystery why she's declining so rapidly. While Ava was getting high-flow oxygen, she was still breathing sort of shallowly, so she was also getting BiPAP? (some kind of pulmonary treatment) every 4 hours -- this kind of mask that puts a little more pressure on her face and encourages/forces her to use the fullness of her lungs. (Not sure if I'm explaining it properly, but that's the gist as I understand it). Now, she is continually on BiPAP CPAP. It took Ava a while to get adjusted to it, but she is feeling okay about it now and her O2 sats (oxygen saturation) are at 100%.

What is going on?? This is what I understand are the possibilities:

1) Bacterial infection - Nothing seems to point to a bacterial infection, so it seems the least likely. Even so, Ava is on an antibiotic.

2) Viral pneumonia - the BAL yesterday should shed light on that.

3) Fungal pneumonia - again, the BAL might shed some light on it, but only if it yields a positive result, as it can give false negatives (meaning fungus might be present, but the test missed it). Because fungus takes a while to grow, the test results will take a while. In the meantime, Ava has been started on an antifungal. However, given how quickly Ava's lungs have declined, it doesn't seem consistent with a fungal infection.

4) Lung GVHD - It's possible Ava might be experiencing acute graft-vs.-host disease in her lungs. Steroids would be part of the treatment plan in this case (Ava was started on steroids), although the steroids wouldn't be helpful if Ava has fungal pnuemonia since they further suppress her immune system.

5) Lung damage (e.g. from radiation/treatment) - a possibility, though it's unknown. I don't know if Ava's rapid decline would be consistent with something like lung damage, but I really don't know.

6) Idiopathic Pneumonia Syndrome (IPS) - idiopathic just means that there is an unknown cause, and IPS involves symptoms that mimic pneumonia, but without presence of infection (thus, unknown cause). It is a very serious condition, and one that everyone hopes is not that case for Ava.

As you know, any infection in someone immunocomprised like Ava can be serious and life-threatening. Pneumonia is high on that list, being one to avoid, and/or to catch as early as possible. It is sobering to weigh the options now and find that the fungal pneumonia is what everyone seems to be "hoping for", as the other possibilities would be even worse.

Meanwhile, Ava remains NPO (no eating/drinking) in case they end up needing to intubate her. (No one desires this scenario). She had really dark stools and also coughed up some blood last night in her resistance to the bypass mask. 

Thank you for your fervent prayers for the Lee family.

UPDATE (1:10pm):
Ava is comfortable again now that she is on CPAP. The fungal test came back "undetermined", so they are running another test to specifically look for a pneumocystis, a type of fungus. It is common for no definitive results to come back... it's more that if a patient improves on antifungal treatment, it is assumed that the patient had a fungal pneumonia in the absence of any other definitive diagnosis.

Thanks for your continual prayers!


Random Thoughts said...

I think you meant bipap. It's a mask used to help blow off a patients carbon dioxide levels because they are retaining. Praying for this little one they find out what is wrong ASAP.

Peter said...

Our friend in Sinagapore is offering up prayers for Ava in the mass he celebrated last night with his congregation. We are praying for God's blessings upon Ava and your family!

jaemom said...

Oh, bipap!! Yes, I think you're right. Thank you.

Anonymous said...

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.