Fortunately, they decided to do a chest X-ray. The X-ray revealed a large amount of fluid around her heart and partial lung collapse from the fluid buildup. They are doing an emergent procedure to drain the fluid (which may be finishing up soon?) The fluid is putting a lot of pressure on her lungs and heart and also making her heart work much harder.
At this point, some potential causes they are considering:
1) something viral - a virus could cause fluid buildup, but the initial viral panel came back negative, so this seems less likely
2) leukemia - it's possible that the fluid is a result of active leukemia, but Ava's numbers have been pretty good so this seems less likely
3) GVHD of the heart - perhaps the most probable (?) is that Ava is experiencing graft vs host disease of the heart.
You probably recall Ava's battles with GVHD of the gut, and the difficult road of being on steroids. The steroids are there to help with the GVHD, but adds to her state of being immunocompromised which in turn may allow dormant viruses within her like CMV to become active, should they be triggered... there are other things that get more complex should Ava be started on steroids.
Thank you in advance for your prayers.
Update from Esther @ 8pm:
I can't even explain the fear and heartache. 500 ml of fluid surrounding Ava's heart was just drained. She is still intubated and sedated so that the fluid from her right lung can be drained. Doctors say she was experiencing cardiac tamponade and without the swift measures we took today, her heart would have stopped. We thank God her condition was treated in time. Please, continued prayers as we search for the cause. They can range from viral to GVHD to relapse. Thank you so much for carrying us. I feel like shriveling up and dying but feel the power of your prayers.
Update #2 from Mike @ 10:20pm:
A couple times, Ava broke out of her sedation. So they increased the medication. But even after that, she woke up and was agitated. It seems that the tube induced the gag reflex and she threw up quite a bit, about four heaves. The nurse immediately suctioned the tube, hoping that there was no aspiration, which can lead to a pneumonia.
Her breathing sounds pretty clear, and they increased the medication further so she's sleeping. Still waiting on the chest tube to be put in so that her the fluid around her lungs can be drained.
Update #3 @ 12:35am:
Ava is stable. Almost 3 additional cups of bloody fluid were collected from the drain around Ava's heart, but that has thankfully stopped flowing. A chest tube was placed to drain fluid from Ava's right side, with well over a cup of yellowish fluid already collected. The chest tube will hopefully finish draining soon as well. They will get another chest X-ray in the morning.
Fluid from both drains have been sent off for testing. While they do not suspect any bacterial/viral infection, it can't be ruled out until the test results confirm this.
1) for Ava's full recovery
2) that the cause of Ava's cardiac tamponade would be discovered so that it can be properly addressed and not happen again.
3) for no worsening/lasting effects of radiation despite Ava getting her 4th chest X-ray tomorrow in less then 24 hours.
4) for Ava's comfort - being intubated, she can't eat or drink and has called out for water. (I'm guessing this was before they increased her medication to keep her adequately sedated). The best that Mike and Esther could do is apply a wet sponge around her mouth. However, the medications to keep her sedated should help.
5) for all members of the Lee family as they navigate through another upheaval.