Today was surgery day number two:
We even got to see our friend Marianne, the chaplain from chapter eight of our book!
Nathan took Kyrie for some walks while we waited our turn, but they were so worried about her airway we didn’t have to wait very long. She got an albuterol treatment beforehand, and then they came for her right after that.
A nurse came in and said she knew Kyrie was medically complex, and asked if she needed a catheter. Kyrie said, “Don’t you dare!” It was so funny!
Meanwhile, the children were playing back at our host family home while we waited.
When we got back to anesthesia, they tried having us lay her down on her back so they could put the mask on her. That’s when she freaked out, because she has never laid on her back. She would have taken the mask like a breathing treatment if they let her sit up.
Regardless, it’s a heartbreaking thing to watch your child struggle and then see the life drain out of her as she goes to sleep – and I hate that she has all these medical procedures that violate her body like that. We tried hard, asking which arm she wanted for this or that, or if she wanted Mama or Papa to hold this or that, or if she wanted blood pressure on her arm or leg, etc. But there are no choices about anesthesia, and she knew we had again betrayed her.
Some results came quickly, and some we are still waiting on…
She has new nodules growing on her vocal cords, probably from so much coughing and choking, that can get in the way of transitioning between breathing and swallowing, and also impact speech (which is already super nasally from the cleft palate and wonky uvula).
Her “prominent tongue base” is blocking her airway, which we already knew, and is a significant problem.
Her epiglottis is also too big and the wrong shape, causing problems with managing her secretions (aspirating on them) and breathing and feeding. And beyond that, her airway is still too small.
Beyond that, her right lobe of her lung was full of fluid. That’s the same lobe she usually gets pneumonia in, and so they think she is continuing to aspirate more than they thought… and so they made her NPO! That means nothing by mouth! Like at all, ever! From now on, she has to be fed exclusively from the g-tube.
(Think about that. No birthday cake. No popcorn on movie night. No apple juice. No chocolate milk. No crackers – that child has lived on crackers and cheese since she could walk! Not even sacrament bread and water. No snacks in nursery on Sunday. Nothing.)
And, instead of coming back next year, they want us to come back in three months.
We were shocked, even though we know we have one sick little girl.
In the meantime, the children had a Moana movie night with popcorn and everything! How’s that for special time to keep them calm and distracted? They were so worried for her! Time and again the blessing has been fulfilled that their prayers would save her.
I was relieved they were safe and distracted, because we were terrified.
We nearly lost Kyrie again today.
She struggled with extubation, as she does, and they took us back to PACU in case she passed and called the chaplain for us.
But they were able to extubate her, with high flow heliox (helium to make the oxygen lighter to make it easier to get it through her small airway).
She was in a coma, but breathing.
We fought through a coma and a collapsed lung and a rough awakening that made her mad as anything, but by the end of the night did not have to admit her since we already have palliative care.
She *is* breathing. And she is home with us here. She is breathing. She is breathing. She is breathing.
I’m not yet, but she is.
We wait now for more test results, including the big one of the MRI about the stroke issues in her little brain… and the pictures of her jaw for information about options for her airway (another jaw distraction or a trach, etc.).
And this girl? After so many scares and such a hard week, she is breathing. That’s all that matters.
Except for what matters to this girl.
She has now been told she cannot eat anymore, and she is mad as she should be.
But I love bananas, Mama!
Nathan went to the grocery store in the dark, picking up banana baby food. We used a slip tip syringe to inject it into her belly through her g-tube, and then let her lick the very tip – not enough for any substance even for secretions, but enough to think she had a taste.
Thank you, Mama.
I love you so much, Mama.
And I also love bananas.
What do you say to that?
We got this, baby girl.
We are a family who does hard things.
And then she gave herself some yogurt, which we also got since she had so much medicine today. I helped her draw it up and get out the air, and she leaned back on our pillows that prop her up so she’s not really flat on her back. She opened her Mickey button by herself and put the syringe in by herself. And then we pushed together.
Because I’m hungry, Mama.