We are going home!
But it’s good and okay and I am comfortable with it now.
The pulmonologist came and spoke to me for a long time, listening very patiently and teaching me and talking with me about what her choices are and what we can do to keep her healthy and well.
The first thing is that because we are adopting her, and because her airway is at least big enough for intubation now, we have the choice of letting go of Cincinnati. We still need them for some pieces in the future, but he doesn’t think she needs as many surgeries as they are proposing or that we have to be that aggressive in her treatment. She needs air and time, he said, and surgery always messes with both.
Never consent to any surgery you are not comfortable with, he said, or let anyone do procedures you don’t think she needs, in the same way as you advocate and don’t let your daughter be discharged before she is ready.
He suggested we meet with the new ENT we found and like, and see what he is willing to do for her and how comfortable we feel with what he says.
The reason he wants to delay a trach is that she is more than just PRS because of bio-mom’s substance abuse, so part of her problem is not having enough air sacs or aveoli, and she needs time to grow these to improve lung function. I had no idea! That even gives us something specific to pray for in a new way! Because of this, bypassing her narrow airway won’t help entirely and he doesn’t want her on a ventilator. That said, if she can’t get enough air into her lungs she won’t be able to grow more air sacs or lengthen her chest cavity (which is too small) so bypassing via trach may become necessary anyway, but at least now we understand why he had voted to wait if we could. He knows, though, that trach and gtube will be options throughout her life.
He also apologized for not clarifying these things earlier, and I shared with him my progress in getting used to being the parent and not “just” a foster parent, and so struggling with expressing myself well.
He also apologized and even said he was wrong about trying to wean her off oxygen too early. There is just no way to know without trying, and she had so many miracles he had hoped maybe she would do okay without it. He wants her to stay on oxygen during the day, give her some small breaks each day, and turn it up anytime she is sleeping.
The new local ENT is still going to talk to the ENT in Utah, and we will see what they think, and he can follow her more closely if we are not going back to Cincinnati.
In the meantime, this girl slept for almost 26 hours, then woke drenched in sweat. Her week long fever had finally broken, and she finally ate, and sat up and played! She slept all night with only four central events and seven obstructive events, no desats, and sleeping all night. She woke with the best color she has had in ages, a clear nose, and excellent sats! She has held this all morning so far, and even had her first pancake!
By the time the pulmonologist came, she was up and jumping and dancing and playing, and he finally saw the real her when she has plenty of air to move and be her happy sweet self. He couldn’t believe it! I was so glad, and very much relieved she is feeling better for today.
I am okay now with us going home while the ENT works on the trach plan and we cancel some things in Cincinnati.
I am grateful for real doctors who care, for whole teams of people who keep my baby safe, and the prayers of so many who keep her alive.
How many lives do cats have again?
Miracles, I say.