Parents face the challenges of at-home nursing for their fragile son

By Louise Kinross

Kat Truong's son Paxton was hospitalized for months after his birth.

First he had breathing problems, then he was diagnosed with organ anomalies and DiGeorge syndrome. "Difficult doesn't even begin to describe it," says Kat, who was also juggling care of a toddler with her husband Paul. 

In March, Paxton had surgery at SickKids Hospital to create an opening for an airway through his trachea. Kat immersed herself in learning how to care for Paxton's tracheotomy, and do his g-tube feeds.

The family was transferred to Holland Bloorview for six to eight weeks to fine-tune their medical skills. "My husband and I each had to demonstrate being able to change out the trach properly three times, show we can suction him, and do a 'care by parent,' where we stayed in a private room and did everything ourselves to prove we could do it." 

Then they hit a stumbling block. Paxton requires 24-hour care, so the family needed nursing coverage at night to bring him home. In Ontario, home nursing can be arranged through government-funded agencies who provide nurses to cover the allotted hours, or by using a family-managed system where parents recruit and hire their own nurses and submit invoices.

"We knew there was a nursing shortage everywhere," Kat says. "But we were at the finish line with our training and we decided to give the agency route a try. That meant going home on a weekend pass with two night nurses."

Imagine Kat's horror when she got up during the night to check on Paxton and found the home nurse fast asleep. "I was so upset I told her to leave," she says. "Paxton needs 24-hour eyes on him."

The family had already stayed at Holland Bloorview a month longer than necessary while trying to arrange home nursing, Kat says. "Mentally I just couldn't take another day in the hospital. I wanted to bring our baby home. I came back and told the doctors what had happened, and said I don't think the agency route is the right path for our family. I didn't want to waste another week or another month, so I asked them to discharge us with one agency nurse and to expedite us on the family-managed program."

For the next month-and-a-half, the agency nurse only came for two shifts, calling in sick for the others. That meant Kat and her husband slept in shifts: "We were only getting about three hours of sleep a night, which wasn't sustainable. I've heard this is a struggle for a lot of families with kids with medical complexity."

Kat researched Ontario's Family Managed Home Care program and recruited four nurses on her own. "We had good relationships with two NICU nurses at SickKids who we adore. I asked them on a whim if they were interested, and they said they were waiting for me to ask. I found two other nurses on FaceBook. We love these nurses and I feel comfortable going to sleep when they're here."

Some families find the paperwork tied to the family-managed program onerous, but Kat says "the payoff is so worth it for us. All I have to do is fill in the hours and total on the invoices for the nurses for each pay period, and have them sign them. We do two pays a month. I came up with a system that makes it automated for me. I don't leave everything to the end, I do a bit daily. Then I have funding to send our report to a dad whose child has a trach, and knows the system well. He codes it and sends it to the portal."

Paxton, who is coming up on his first birthday, has blossomed since coming home, Kat says. "He's the happiest boy. He's smiling all the time. He love music, he loves singing, he loves to play. He's extremely active. He's scooting around and starting to pull himself up to his feet to start cruising. Our decision with the trach was incredibly hard, but without it he would still be in the hospital. For his development and health and overall quality of life, the trach was the way to go and he's doing fantastic."

While Kat is happy with the family-managed nursing her son is receiving, she is concerned about the competency of agency home nurses. "It's a really uncomfortable feeling to have strangers in your home looking after your child, never mind to be put through the kind of risky situation we were. I know agency nurses are underpaid and that has a lot to do with the quality of care. There has to be a better process."

Another Holland Bloorview parent spoke about home nurses without proper skills being sent to care for her son and numerous near safety misses in this earlier BLOOM piece. 

One piece of advice Kat offers parents whose newborn is hospitalized is to carry a journal to document conversations with health care workers. "Every conversation I'd have I'd write down," she says. "It helps immensely when you don't have a medical background and you have medical jargon coming at you from all angles. It's a lot to take in, and sometimes I might have a conversation in the moment but I don't remember it the next day. Having a paper trail of everything is wonderful so you have something to fall back on when you have questions. Your mind is going through so many emotions that you can't always think clearly."

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