Day 6 Update

We had a very encouraging talk with Dr. Ilbawi, Dr. VanBergen and the rest of the staff today. Dr. Ilbawi confirmed that they had discovered a bronchia off-shoot from her trachea, and after suctioning all the blood out of her lungs, they were able to see some bleeding in real-time come from this extra bronchia. As I described in the last post, this off-shoot is above the corina, i.e., the main split of her bronchial tubes. It is feeding her lungs oxygen and blood, but they do not know how much exactly. It is very small, though.

I grabbed the picture below from the Internet (it's horrible, I know) and added the location of the "extra bronchia" that is going to her left lung, above the main split. The doctors said that having this extra bronchia was unusual, and it has never shown up on any of her other x-rays or angiograms (probably because it's so small), but Evie's entire respiratory system is unusual; it's a hodgepodge of redirected arteries, veins and brochi, as her body made adaptations while she was developing in the womb to make sure that her lungs received oxygen and blood when her pulmonary artery did not develop. Which, itself, is really amazing when you think about it.



Before taking invasive procedures to try and tie-off or block the bleeding, the doctors' plan is to try and encourage the artery to stop bleeding on its own over the next 48 hours. They have stopped giving Evie heparin directly (which is an anticoagulant that prevents blood clotting), in the hope that the bleeding artery in the off-shoot bronchia will clot and stop bleeding on its own.

It's dangerous to not give her any heparin at all, though, so her ECMO machine was switched over to a new circuit (as they call it) with a new kind of oxygenator, and one that also has its tubes coated with heparin, which will prevent the blood flowing through the ECMO from clotting. The photo below is of the new oxygenator.



If the bleeding stops in the next 48 hours, then great! If not, a more invasive approach will be necessary to manually stop the bleeding. A CT scan will be necessary to try and assess the size of the off-shoot bronchia and surgery will be required. But let's all hope and pray it doesn't come to that! Once the blood is out of her lungs, they will be able to work more efficiently.

Regarding Evie's heart function, both doctors were pleased with the small progress her heart has made and believe that it will fully recover to its normal function in time, although it is taking longer than they would expect and like it to happen in. Dr. Ilbawi said they will perform daily echo cardiograms to watch the progress, but he was encouraged simply by observing the increased blood pressure she was exhibiting from someone on an ECMO at this point.

So, we're back to "wait and see" and the next 48 hours will be an anxious time as we certainly hope this bleeding artery stops on its own. Evie herself was awake (if not fully conscious) for a good portion of the afternoon and very squirmy. Sometimes Sharon and I feel like we're doing more harm than good by sitting with her and trying to calm her, because just the sound of our voice gets her all riled up (which is what we're trying to avoid!).

Gavin is doing a little better and today he spent the day with his Uncle David while Sharon and I were with Evie. He was in a great mood when we got home and was very playful. However, we have noticed some significant changes in his playing habits.

For example, pushing their walk 'n ride carts around the house was a favorite game between Gavin and Evie and he was so sweet how he would wait for her to catch up to him. However, since she's been gone, he won't play with his walking cart by himself at all. When Felix and Pierre were over the other day and one of them started pushing the cart, then Gavin joined in briefly. But if Gavin is alone, he won't touch it.



"Decisions, decisions. Yogurt, milk, baby food, hmmm...."



"Can I have some of this chicken fried rice, Mom?"