Water sustains life. People swim in it, bathe in it, ingest it, and probably would not describe it as dangerous. However, when you or a loved one aspirate, it becomes dangerous. Piper, our daughter, was diagnosed as a silent aspirator at birth. My plans of breast feeding disappeared with the introduction of an NG tube and morphed into hours of pumping then gravity feeding her through a tube. My milk was supposed to be the base fluid of her living organism, yet it held the power to end it.
As she aged, we were able to get rid of the feeding tube but became tethered to thickener. The only way Piper could drink fluid was to have it thickened to the point that she would not aspirate. Doctors use a test called an MBS, modified barium swallow, to determine if a person is aspirating. A person drinks fluids of different consistencies containing barium while being observed via radiation technology. Piper failed every MBS. So we started thickening liquids to honey consistency and a year ago finally graduated to nectar consistency.
What did this mean for our family? We could not allow her to play in the pool or bath without supervision and physically keeping her head above the water. She could not easily grab a juice box or water bottle at a gathering. Her teachers were not allowed to give her anything that I had not prepared to appropriate consistency. We even had to thicken liquid Tylenol or Benadryl. Jello, soup, and ice cream were not allowed.
A year ago, we restarted a therapy called Vital Stim. It is the placement of electrodes to the throat area for an hour a session, while actively swallowing, and is supposed to strengthen the swallowing function. We had tried it when Piper was three years old, but it did not work. The Lord opened the door for us to get 48 vital stim sessions covered at Phoenix Children’s Hospital last year. Piper did well, but was still aspirating. Schedules and paperwork kept us from being able to complete the therapy to efficacy.
Amazingly, in the past 2.5 weeks of vital stim at NAPA, Piper is thickener free! We have weaned her off of it and are cautiously introducing different drinks and cup types. This is a miracle that my sweet mother, Grams, prayed for and claims daily.
In addition to vital stim, the sweet speech pathologist at NAPA, has taught Piper to suck on a lollipop, stick her tongue out to lick a lollipop, and almost efficiently drink out of a straw.
In John 4:14 the Bible says, “but whoever drinks of the water that I will give him shall never thirst; but the water that I will give him will become in him a well of water springing up to eternal life.”
We are blessed that this therapy opportunity came to fruition and has been such a success. Piper will have eternal life.