This goofy girl saw the pulmonologist today.
He had copies of her scopes and tests from Cincinnati, and said the same thing they did. Her jaw distraction opened up her throat part of her airway, but below that is still smaller than a coffee straw and even smaller at her voice box and below that. She is still a level 4 airway.
She still, after all this, has almost no airway, even though she is so much better than she was… Or, as the doctor said, she’s still trying to breathe, which is better than dying, but isn’t the same as breathing, and she won’t live without breathing.
He agreed with them that more jaw distractions as she grows will be necessary to open up the top part of her throat and keep her tongue from blocking her airway… But also said that doesn’t do anything for the lower part of her airway.
The only thing they can do for that is bypass it by traching her.
She also has pnuemonia for the third time this year, and the sixth time since last fall.
He wasn’t happy about that, and says if she gets pneumonia in April, or if her weight drops more than two ounces before then, he will do a gtube.
He is adding an inhaler when she is breathing too hard or too fast, and also so that if she can learn to use it then he will have more choices of what he can offer her for medicine besides only steroids.
He wants her to stay on at least one liter of oxygen during the day, so she can breathe and her heart won’t work too hard, but then also turn it up when she is sleeping.
He said to watch her when she gets old enough for allergies (this fall or next spring), as that will put her airway back in crisis so we need to catch it early.
We finally got a new neurologist locally to watch her Cerebral Palsy, and a pediatric ophthalmologist to watch her eyes because of the pressure of oxygen her whole life (and the left eye that doesn’t always move or respond like it should). We also got her appointment for the audiologist, since Cincinnati says she can’t hear out of one ear and prolly has significant loss in the other. We go back to Cincinnati at the end of April for MRI, neuro testing, airway X-rays, and new scopes and surgery either for trach or distraction or both.
He said they didn’t expect her to live through the winter, and so he was thrilled to see our miracle baby.
She was less thrilled to see him, and Anber told him that she likes her regular doctor better. Classic.