Day 29

Yesterday was one of the longest, hardest days of our lives. We met with the doctors around 2pm. We discussed Hailey's chronic lung issues. They feel that Hailey's lungs have finally taken one too many hits from getting the human metapneumonvirus after all the other things she has been through and that she is unlikely to be able to be extubated any time soon. Even if she were able to be extubated and make it home, the fear is that one more episode like this could cost us her life. High levels of prolonged sedation can cause irreversible brain damage and having the tube in the soft part of her throat can cause permanent narrowing. The high CO2 is also dangerous, even life-threatening. We contacted Stanford and they made some recommendations as well, but we feel like everyone agreed that the data points toward a trach. No one can tell us how long she might have it. It might be years, it might be forever. We don't know. They have her on the schedule for tomorrow. We had to let them know today whether we wanted them to hold off or go ahead with the surgery.

We have never wanted to do anything less than we want to do this because the implications are so life-changing, not to mention the risks of another surgery.  I have a lot of concerns about the logistics of trying to care for Hailey at home with a trach and still be a mom to my other kids. I can't explain what I feel. We spent all day going over the facts, the risks, the logistics, praying, grieving the life that will not be ours any more for a while, maybe never. It is crazy though because going forward with a trach and letting them do the surgery tomorrow was the only answer that brought us peace despite the mountain of fear, pain, and grief. I feel like sometimes it is easier to know that your answer is coming from Heavenly Father when it is the opposite of what you want it to be because you feel peace going forward despite it being what you don't want to hear.

Over and over again, we are being taught to let things be in Heavenly Father's hands. Hailey was His daughter way before she was ours and He loves her and us more than we can comprehend. I have no idea what the future holds, but I have felt Heavenly Father's love for us over and over through this difficult process.

The hope is that as Hailey grows her lungs will get stronger and actually develop more lung tissue. Hailey will be even more susceptible to getting sick in some ways because germs have a direct path into her lungs, but again the hope is that when she does get sick the illnessess will be more managable. She will not have to be intubated or extubated. They will have a stable way to get air to her lungs.

We will need lots of prayers to get through the next few days. We have surgery and then several days of training to go through to be able to care for Hailey.