Good news/bad news

Natalie's swallow study was this morning. The good news is that she cooperated well, eating and drinking everything that was offered to her, so we got a true reading of what she's really doing. Thankfully, she doesn't aspirate on any kind of solid food.

The bad news is that she has trace aspiration (silently, meaning she doesn't cough when she aspirates) on thin liquids (like water). The therapist feels Natalie might also have slight breakthrough aspiration on regular liquids (like milk), but she is completely safe on nectar-thick liquids.

This is only the second swallow study she's ever had. With the first one, I tried to get someone to "quantify" how much she was aspirating, but neither the x-ray doctor nor the therapist did so (at a different hospital than where we are now). However, I think her aspiration was worse than now because they stopped the test immediately, and that was with nectar-thick liquids.

Here are pics of setting up for the event. The therapist said it was fine to take pictures, but as soon as the doctor arrived, he said, "No pictures!" Natalie was only wearing a towel because the barium solution wouldn't wash off her clothes if any spilled on them. She hadn't had breakfast, so the pacy was keeping her calm and giving her something to chew on, with an empty stomach. You can see she's strapped in a chair, and the contraption on either side of her is the x-ray video equipment.

So what does this mean? We're now only going to give her water by sippy cup at home (not milk/pediasure for a while), because if she aspirates a little water, it's not dangerous, and she still needs to practice swallowing. It also means our days at CHOC are not over yet. Natalie's therapist is still optomistic that she will become safe for thin liquids after additional therapy.

Thanks to all for your prayers for this test. We have another "test" coming up on Wednesday, where she will go under anesthesia to have her larynx and esophagus examined to see if there are any structural anomalies that contribute to her aspiration, and while she's under the ENT will make sure her ear tubes are placed correctly and the ophthalmologist will also check out her eyes. We'll keep you posted!