Over three days leading up to Saturday, Paloma made small improvements that were enough to discuss extubation. Respiratory tests and imaging were positive and she weaned down incrementally on meds that were supporting her heart health. Still, all progress hinged on how her low-functioning heart would handle the weight of extubation.

While a typical child's heart pumps <55% of volume in blood to the body, Paloma's heart was only pumping 15%, her ejection fraction (EF). An EF of 15% percent is considered severe heart failure.

Furthermore, doctor's discovered a large clot in her heart, caused by the low blood flow. Medicine was given to break down the clot, but after two days, the clot remained unchanged.

At this time, our family felt beaten down. We were receiving back to back diagnoses that when paired with her preexisting conditions, weren't offering a confidently positive outlook. As a special needs/medically complex family, our reality is to prepare for everything, which in reflection opens wide the ability to find joy in everything. We mentally prepared for Paloma to pass, not in a sense that was conceding, rather we sought peace in whatever God had written for her. Around her hospital room there are pictures of Paloma smiling, loving on family, and pictures of friends, family, and strangers, showing their smiles in support for her fight.

On Friday evening, doctors gave news that the clot in Paloma's heart had measured only 50% of its original size. While this sounds positive, they quickly rushed her to imaging to confirm whether a piece had broken off and moved, for fear that it could travel to her brain. Late that night it was confirmed that there was no sign of a fractures clot, in her brain or anywhere else in her body. 

The decision was then made to extubate on Saturday afternoon. The same risks remained because of her EF of 15%. We asked for ultimate transparency and the doctors made it clear that we would know within minutes of extubation whether Paloma's lungs could sustain on their own, or if her heart could handle the new workload. The situation was critical enough that doctors suggested our family be present, and that Lisa and I stay in the room during the procedure.

Saturday morning was spent with our family, Lisa's parents, and her sister in Paloma's room. We all talked to Paloma and Lisa's dad sang to her as he does. When the moment came, everyone waited in another room while Lisa and I stayed behind. The three minute procedure felt like three hours. Her doctor narrated everything that was happening as to hold our hand through every step. As the breathing tube was removed, Paloma briefly struggled for air. Quickly her stats picked up, her breathing stabilized, and there were no signs of her heart struggling to pick up the load. The body does amazing things, God does amazing things, Paloma does amazing things.

Every day since Saturday, Paloma's stats have improved, literally shocking the medical team. No one doubted Paloma. It was known and understood that this positive of an outcome was on the table, but the odds were very much against us. When the day shift checked in the next morning, nurses and doctors who had since rotated out stopped by to witness Paloma and her fight. They were all excited to see her more comfortable and progressing. Today nurses from the previous week are continuing to visit Paloma and cheer her on. Today her Megazord of pumps and equipment has been downsized to one single pump for her heart medication.

We've underestimated our ability to keep our promise to consolidate updates here. The moment we think we have time to slow down, we are pulled away. Even more so at home. With the routine we have shuttling back and forth between the hospital, there isn't much room to keep up with our typical day. So, many many thanks for the support that has allowed us to cover meals throughout the day. Nothing about going home will be the same. Paloma will have new care, new specialists, and new expectations. But part of how we show our love is to pivot, and go with her flow.