Hope

Well...today was the big day. We managed to make it to the hospital on time despite the crappy roads and morning rush hour traffic. Barely!

FEES...Fibreoptic Endoscopic Evaluation of Swallowing

Poor Taylor, with the NG tube already in one nostril, the doctor shoved another tube down her other nostril, a tube with a camera on the tip. We then watched Taylor drink a bit of bottle on the screen. It was very interesting to see what actually happens back there when you are breathing vs. swallowing. I could see the "pooling" and "bridging of the airway" that they have been talking to me about where some of the milk pools and hovers over the airway instead of going down the esophagus when Taylor swallows. I could finally see what was actually happening when Taylor makes the gurgling sounds as she feeds. Despite the gurgling and pooling of the fluids around the airway, the doctor did not see an aspiration occur.

Great news. However just because it didn't happen during the 7 minutes of this feeding study doesn't mean it couldn't happen. So the recommendation by the OT is still to thicken the fluids to give Taylor better control, and that we can go ahead and start introducing oral feeds back into the mix.

What a relief! If we can get her eating and drinking again...safely...then at some point we'll be able to get RID of the NG tube. This is promising.

Next on the schedule today was the Neurologist. Dr. Bello was pleased to hear that the feeding study was positive. We're done with the Vigabatrin wean. He wants to continue the Phenobarbitol. We'll stay on the Phenobarbitol. Dr. Bello had dangled a little carrot in front of me a few weeks ago one afternoon while we were in the hospital. There's a drug called Levadopa, primarily used on Parkinson's patients, that he has used in certain cases like Taylor's. He wants to trial Taylor on a low dose. Because of her severe hypotonia (low tone), because of her severe intractable seizures (that do not respond to treatment), and because of her choreic movements (involuntary, abnormal, spastic movements that are not purposeful). He has treated a small number of similar cases over the years with l-dopa and has seen significant improvement in development and significant improvement in seizure control. Seems like a miracle drug, I'm in. Now that Taylor is stable, he has given the go ahead for us to start. The neurology pharmacist is going to put together a schedule for increasing the dose slowly over four weeks. He also needs to work with the dietician on the mixing instructions of this drug, because it has a carbohydrate content, and that will affect the ketogenic diet. It's never simple!

With today's happenings, I have hope.