24 hours after his premature birth, our youngest son Parker, was Life Flighted to Primary Children’s Medical Center in Salt Lake City, Utah. Several weeks in the NICU, an emergency surgery to create an ostomy, and long nights of prayer, we finally brought our Brave Hero home. Along with Parker came all kinds of excitement:
- Chronic Lung Disease
- Imperfoate Anus
- Ostomy Bags
- Tethered Spinal Cord
- Severe Pulmonary Hypertension
- So many medications!
- A lifetime of oxygen bottles and tubing.
Parker’s Down syndrome is the very least of our worries. You can live a long and productive life with an extra chromosome! Your odds of that are greatly reduced when your first pulmonary hypertension values come in at a whopping 157! Especially since normal values are under 25. High pulmonary pressures cause the heart to work so hard that its owners life span is significantly shortened.
Where Parker is today:
Parker sports both a trach and a g-tube. . Two of the best decisions we’ve ever made for our Brave Hero. . The trach provides a secure airway and the g-tube supplies a way to feed Parker without everything dumping directly into his lungs. Unfortunately, Parker’s most recent chest CT shows that he is still aspirating, and that his lungs have suffered new aspiration assaults. This leads us to realize that more must be done to protect Parker’s lungs than his Nissen and epiglottic fold over.
The ostomy bag is gone and we are determined that the Pull-Ups will be gone soon as well.
Although still on oxygen 24/7 and a vent when he sleeps, Parker refuses to let that 50 feet of tubing slow him down one iota. You can regularly find him engaging in the typical activities of any other almost 10 year olds.
Parker receives services via our school district’s Home and Hospital plan. The rest of the time I home school him. It’s been a grand adventure that allows me to put my degrees in education back to work.
As you can imagine things around here are busy! I set a timer to go off every hour during the day in order to make sure Parker receives all of his feedings and medications. Lucky for us, in the midst of all the busyness is a lot of love, gratitude, blessings that come with a Brave Hero with Down syndrome.