In the eight years that Carl and Tanya Whitley have cared for their son Tim in their San Jose home, they’ve weathered many challenges. Duchenne muscular dystrophy makes Tim reliant on a ventilator and a host of other medical equipment. His lungs must be suctioned out many times a day.
Now the family is confronting the supply chain shortage, an issue faced by lots of Americans — but for them and others who depend on at-home medical equipment, the stakes are dramatically higher.
“If you can’t find the right color shoes, or your kid can’t get the toy they want for Christmas, it will be fine,” said Mike Scarsella, vice president of the home medical equipment division of Compass Health, a manufacturer and distributor. “It’s a little different when mom needs a walker to maintain her mobility.”
Critical components that keep Tim, 35, alive have been tough to come by in recent months. Some are as simple as small plastic tubes, but still are vital to his health.
“All the equipment involved with the (tracheostomy tube) has to be changed out on a regular basis,” said Carl Whitley, 76. “It grows bacteria, is what it does. Every item has a different longevity.”
At various times in recent months different equipment was unavailable: the inner cannulas (tubes inserted into the body) for Tim’s tracheostomy, the closed suction catheter for the ventilator, the omniflex adaptor for the trach tube and the suction canisters.
“We depend on those supplies to help keep him healthy,” said Carl, a retired pastor. Tanya, 72, is a retired church secretary. “Sometimes when (various tubes) were back ordered, we’d have to wash them, dry in the sun and try to re-use them. That’s very scary because you can really grow bacteria if you’re not careful.”
Tanya Whitley works to clean the tracheostomy tube for her son, Tim, who lives with a ventilator at their home in San Jose.
Jessica Christian/The Chronicle
He’s also been forced to cobble together pieces of suction tubing and other parts, MacGyver-style. “You learn to improvise,” he said. His medical supplier, My Best Home Care, tried to compensate for shortages by finding different brands of equipment. Some didn’t work as well. “But you have to make do with what you can get,” Carl said.
For babies and children who rely on ventilators, shortages of extra-small sizes were even more acute, said Francisco Morales, director of clinical operations at My Best Home Care, a San Jose company that specializes in complex home respiratory equipment.
“There was a severe strain in our ability to obtain these to the point where patients had to be readmitted (to the hospital) because there were no trach tubes in smaller sizes,” he said. “We’ve had families calling us; their baby’s been in the NICU for 17 months and came home for intensive care and we couldn’t get them their trach tube.”
For infants and children, trach tubes have to be replaced as often as weekly to prevent their bodies from growing around them, while adults need to swap them out about every three months, he said.
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