An Aldergrove father who has been providing stay-at-home care for his young daughter is heartened by her steady progress.
Isabella Olmr is not recovered yet, and she suffered a relapse last month when the region’s air was thick with wildfire smoke, but she has made significant strides forward.
It’s a round the clock responsibility as Isabella, now just two weeks away from marking her second birthday, has a rare condition that simply causes her to stop breathing.
It started a mere five hours after her birth, when doctors observed “episodes of apnea with severe oxygen desaturation and apparent seizure activity.” Doctors call it hypoventilation syndrome as she shows no respiratory drive but they have not been able to determine the cause.
As a result Isabella spent the entire first year of her life in BC Children’s Hospital, where she had a tracheostomy placed in her neck to assist her with her breathing. A ventilation system was connected, and sensors — a SAT monitor — set off alarms when there is a problem with her heart rate or oxygen levels.
G-tube feeding was also used until Isabella started taking food from a spoon as approved by doctors at Children’s Hospital.
Her father, Andrew, undertook the responsibility of being her sole caretaker after separating from Isabella’s mother in January. He also cares for their eight year old daughter, Rachel, in the home he’s owned in Aldergrove for the past nine years.
“Her mom wanted (Isabella) to go to a foster home but I refused,” says Andrew.
“I took the training; I took a crash course for three months at Children’s Hospital. There’s a lot to know.”
Isabella and Andrew’s story was featured in The Star last November, and in recent months there have been some positive developments.
“She was doing really good, she was off the ventilator all day while she was awake and she was breathing on her own. Then on July 7, when the air was bad because of the wildfires, she stopped breathing,” said Andrew.
Isabella was rushed into Children’s Hospital, where she stayed for 20 days for observation and recovery.
“They also put her on a puffer, as they suspect she has asthmatic tendencies, but they said it was not a virus. I have to take her back for a couple nights this week for observation, but she seems to be back on track now.
“She’s only on the ventilator when she’s sleeping, she’s eating with a fork, and she’s almost running.
“She’s also got a speaking valve on her trach tube, and she’s using her mouth to form letters. She knows a dozen hand signs too. She’s come a long way in the past year at home with me.”
Andrew, now 50, renovated his house as well as fought a custody battle over the children for most of the first half of the first year, while he prepared to provide care for Isabella in his home. He also quit his job as a heavy equipment operator, after 25 years of working in the business, and was getting by on employment insurance.
“I’ve not been able to work since February (2014). There’s no way to go to work every day if she’s in my care.”
The province funds daily shifts of nursing care in his home to spell Andrew off, but the responsibility and stress are weighing on Andrew.
Every time Isabella leaves home for appointments Andrew must also have a nurse accompany them in case there is an emergency during the vehicle ride.
Isabella first came home on August 22 of 2014, two days after her first birthday, and had endured a few challenges — a couple of seizures, and she had to go back to Children’s Hospital for a week in October when she came down with a bug, likely a flu or cold.
“The seizures happen when her blood sugar is down, so I feed her apple juice for that,” says Andrew.
“The long-term hope is that maybe in a few years she can be off the ventilator. But they don’t know that for sure, they can only guess.”
“It’s like working 10 jobs. Sometimes I’m up for 40 hours at a time, if a nurse calls in sick or whatever and they can’t get someone else in.
“My life has taken a 180 turn, it’s forced me to change who I am as a person.”