Sunday, November 30, 2008

The joy of keeping a disabled child in the family fold

From the Temple Daily Telegram in Texas. In the picture, John Gilliam, LVN with Medical Staffing Network, cares for Dustin Lieu, 15, at his home in Temple, Texas.

Dustin Lieu probably has more medical issues than a person could count.

The 15-year-old has cerebral palsy, epilepsy, static encephalopathy or permanent brain damage and respiratory failure, just to name a few.

Dustin was born dead on Valentine’s Day and brought back to life, his mother, Rhonda Juarez, said.

Ms. Juarez said she didn’t want her son on life support.

“I didn’t want him to suffer … I didn’t want any unnecessary treatments,” she said. “I fought the trach for a long time, until his doctor explained it wouldn’t prolong his life … it was for his comfort.”

Despite the obvious challenges of caring for him, Dustin’s family wants him at home and that’s made possible by the home health care he receives.

John Gilliam, a nurse with MSN Home Care, has been Dustin’s nurse for eight years.

“I’ve worked in hospitals and nursing homes, but I really like this kind of work,” Gilliam said. “I absolutely love little Dustin.”

Gilliam has been Dustin’s only nurse for two years.

Having a nurse, Ms. Juarez said, enables her to be more involved with her other children.

Her oldest is attending Universal Technical Institute in Houston.

Another son is a senior at Temple High and hopes to attend Baylor or Texas A&M.

“He wants to become an orthopedic surgeon and my 13-year-old daughter wants to be a nurse,” she said.

Caring for Dustin is a team effort between Gilliam, Ms. Juarez and her husband.

Dustin requires oxygen 24 hours a day and suctioning several times a day. He takes medications throughout the day and must be watched constantly. Gilliam is with Dustin continuously when he’s on duty.

When Gilliam leaves, the family takes over.

“We’ve had different nurses … I feel safe with John and am comfortable with him being around my other children,” Ms. Juarez said.

Dustin has had upper respiratory and sinus infections, but he hasn’t been hospitalized in years.

“With everyone working together, Dustin has been able to stay at home and out of nursing homes,” Ms. Juarez said.

But, there are other challenges.

“It’s been difficult financially,” she said.

Dustin receives benefits from Medicaid, Supplemental Security Income and the Medically Dependent Children Program. His machines have been paid for and the majority of his medications are covered, as are his nursing hours.

The family has cut back on Dustin’s nursing hours because they would rather not have a different nurse care for him. Also, it’s a way for the family to transition to the time when Dustin ages and loses those nursing hours.

Children with disabilities lose health benefits, including funding for nursing care, when they turn 21.

Ms. Juarez hopes by the time Dustin loses any medical assistance, her other children will have gone to college and will have returned home to help take care of their brother.

“I can’t do a lot of things with Dustin that I used to,” said Ms. Juarez, who injured her back five years ago. “I could never imagine him being in a nursing home again.”

Dustin spent a couple of years when he was quite young in Southland Villa nursing home and his mother was able to get him into her home with help of staff from the Medically Dependent Children’s Program.

“That was killing me and it was hurting my boys … they wanted their brother to be at home,” she said.

Having Dustin at home has been tough on the other children, but it’s also made them strong and more compassionate, their mother said.

“These are not the typical self-absorbed youngsters,” Ms. Juarez said. “Wherever they go they always bring something back for Dustin.”

When her children come across someone with a disability they don’t see the wheelchair or the missing limbs, they just see the person, she said.

“I don’t think I would change anything,” Ms. Juarez said. “Our kids are stronger and we’re very family oriented.”

The family doesn’t feel that they have made sacrifices for Dustin, other than not being able to make much money because it would jeopardize his ability to get Medicaid and other services.

“You can’t make enough money to support everything he needs,” she said. “You can’t save for your kids’ college. You can’t save for retirement.”

When Dustin was born, he was classified as terminal and Ms. Juarez was in the midst of a divorce.

“I hope that parents who have children like my son have an easier time,” she said. “I would tell parents not to second guess what has happened. You can do the best you can to keep them at home.”

There are a lot more children with special needs who are living longer, Ms. Juarez said. She is hoping regulations will change and help will be available to these children as they grow into their 20s and 30s.

“Parents age too and might not be in a position to take care of their children,” she said.

“I don’t want Dustin in a nursing home come hell or high water,” Ms. Juarez said. “I don’t ever want my son away from me, until God takes him.”

Ms. Juarez said she’s counting on her children to take care of their brother if something happens to her.

“Nobody can love him like we do,” she said.