Yesterday we drove to OKC to meet with the ENT.
We knew we would be gone all day, to also visit the temple while in town, so naturally we took sandwiches:
We didn’t get the chance to show him any of that.
He jumped in right away, with all kinds of plans based on whoever he has talked to last that definitely wasn’t us.
It took me back to when we first got her, and they would talk about all that was wrong, but that her airway was such priority nothing else mattered.
Now we are to the point when everything else matters.
Her airway is better than it was, he said, which we know because she doesn’t sound like a lawnmower like she did as a newborn. He said her tongue-lip adhesion failed, but her jaw distraction was a success. We would agree it saved her life even though it was brutal, and we know we can’t go back in time to have her trached two years ago. The past is done, and we are glad her airway is better than it was. We have talked about that with the pediatrician ages ago.
But there is nothing else he can do to fix her airway further, he said. It’s beautiful and perfect and she has been through so much, and what is left is cardiac and neurological, not ENT.
He can work on her swallowing, which continues to be a problem, and he’s going to do a scope to see if there is anything he can do to help that. There might not be anything, but maybe he could do something. He is looking at her swallowing and her aspiration. She is choking less since the new medicine she is on, but she isn’t eating much.
For the not eating, and to get the tube out of her nose, he is referring her to a GI doctor. This doctor will help her either not need the feeding tube or go ahead with the gtube.
He is also sending her to a cardiologist to check up on her heart, as the ENT thinks her fatigue and color changes are cardiovascular and not airway, except we thought she was already cleared by the cardiologist.
He said seizures may be involved also, but we thought she had already been cleared of that, too.
It was not a day for us to share or ask questions, but a day for us to be told of his plan of what other people are going to do.
So we are done with pulm, and done with ENT, and she is fine, and blue is our baseline, with a fever of 99-100 and coughing and choking and not eating and just pretending to drink.
It’s good, so good, to know we can leave her be and not need further interventions that are so risky.
It’s a relief. Really.
But it’s also a bit despairing, not to have a way to make her better.
Nathan asked directly, and the ENT told us just to accept how she is, and that this was him giving us encouragement and hope.
Her next appointment is with palliative care and neurodevelopmental team to see what they think from their perspective, and decide on an official plan. Theoretically.
So really, the only thing we decided to do for now is address her comfort – including using Christmas money gifted to us to buy her an upright car seat that is still rear facing, because she gagged and choked all the way to and from Oklahoma City, almost like the old days.
But the ENT said obstruction isn’t positional or variable. We and some other doctors disagree. But her sleep study was good this time. So she’s fine, as always, just fine.
I am out of advocating juice.
Kyrie is old enough she can just take over now, and can give her own lectures all about how airway drama is kind of like watching a tennis match, where the ball goes back and forth and you only get a point by thinking outside the box.