Pixie Stix - First session of Vital Stim

Several weeks ago, I scheduled Gracie's first appointment for Vital Stim and, as I was making it, I had a fleeting thought of, "That's the anniversary of her first open heart surgery." But it wasn't until the morning of the 25th that I realized there was a real irony in the date that she began this therapy.

The 25th of August, because it was the day of her first open heart surgery, represents a series of events that significantly detoured the path we'd been traveling with our daughter. In the weeks to come, she had four failed attempts at extubation (getting her off the ventilator), an episode of significant oxygen deprivation and repeated raised CO2 levels... all due to a very angry, floppy and, at the time, insurmountably compromised airway. Then came countless tests, procedures, the pacemaker, the trach and all that goes with it.

Her airway has since healed and, though there are structural anomalies within her airway, the reason she remains trached is her inability to swallow her own secretions. August 25, 2004 was the last day that Gracie had a functional swallow of any sort. Five years... to the day... she started Vital Stim. Though I remain cautiously optimistic, I would be lying if I didn't admit that I find great symbolism in this realization. I tried to tell myself that I shouldn't be more hopeful because of the significance of the date, but secretly I was (am). And as I wheeled Gracie into the reception room for outpatient therapy, I realized I was holding my breath.

I was so nervous. Nervous that she'd not even tolerate the electrodes on her neck. Nervous that it would be a negative experience for her and she'd not last the full time. I was nervous for Gracie because I know this is, at least as of today's therapies and medication intervention, our last chance at helping her rehab her swallow. Though I claim to be "cautiously optimistic," I guess my nerves proved that I am hoping beyond hope that something comes of this. My head knows it's a long shot - - and my heart believes in long shots.

As it turns out, my nerves regarding her tolerance of the therapy itself were all for naught. Gracie handled the first session beautifully. Her therapist was great with her and set-up slowly to give Gracie a chance to check it all out. She was curious about the electrodes and tape on her neck, but only gently touched them. As the therapist turned up the electric stim, Gracie would freeze a bit and get this look like, "What's that?" A couple of times, but only for a brief second, she grimaced as the intensity increased and the left side of her face twitched a bit. Best of all, (and guaranteed to make her want to go back again and again), she gets to taste things the whole time! She started with a lollipop (fitting, as we've affectionately called her "Lollie" for years!) and then progressed to a tongue depressor dipped in Orange Pixie Stix! She loved that! She signed "more" and "ready more" throughout the session.

During the three month trial, we will be watching for an improvement with the number of times she requires suctioning during a session (and later, at home), the amount of times she coughs and secretions come out her trach, her ability to swallow as we increase the "management" difficulty with the types of tastes she tries and she could possibly have a repeat swallow study. At the end of the three months, it will be determined how/whether to proceed.

And though the skies didn't part and Gracie didn't miraculously swallow everything in her mouth, she did have many audible and visual swallows during the session. One, in particular, was done with great timing and coordination in relation to her tasting of the Pixie Stix. Her therapist was completely impressed with her tolerance and was happy with the oral motor activity she saw along with the swallowing attempts during the stim. So, as I continually say regarding so many things with Miss Gracie, these are baby steps... but they are steps, indeed!