We just had our meeting with the doctors involved in Ellie's care. The information given to us was not what we wanted to hear. We were told that Ellie's pulmonary hypertension is getting worse and they don't know if it will get better or continue to get worse. If it gets worse, it will be fatal. The doctor's seemed to be cautiously optimistic that the tissue expander may help her bronchus issue. For those of you that don't know, Ellie's organs are reversed, called Situs Inverses Totalis. Because of her chest lesion, her heart was moved from her right chest cavity to her left. In turn, her aorta runs from her right neck across her bronchus to the heart. The aorta is pulling on her bronchus making it narrowed (not kinked like they thought before). This has been going on since gestation and the pressure of the aorta on the bronchus has caused the narrowing. This is were the tissue expander or chest expander comes into play. The tissue expander is inserted through and past the rib cage beside the heart. The expander portion is a bag that is filled with saline to make the bag expand. As the bag expands it will push the heart more towards the center of the chest freeing up room for the aorta. While this is not guaranteed to work, the doctor's think that it may help her. There are risks associated with moving organs, vessels and such, but Ellie needs to be able to be ventilated better. If the aorta isn't freed up from the bronchus, her respiratory issue will worsen.
So, as you must already know, we NEED more prayers. Ellie has in some ways improved, but she still has a long way to go. April and I would appreciate it if everyone would continue to have faith and pray for our baby girl. We know our God is able to heal her, we just have to have faith and continue to pray. Please petition our Heavenly Father to continue to bless her and to continue to perform miracles in her little body. Thank you all so much for caring and praying for Ellie.
God Bless,
Matt (Ellie's daddy)
