An Aldergrove father is struggling physically and financially in dealing with his young daughter’s serious health issue.
It’s a round the clock responsibility as Isabella Olmr, now one year and three months old, 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 has spent the entire first year of her life in BC Children’s Hospital, where she had a tracheostomy placed in her neck just over a year ago to assist her with her breathing. A ventilation system is 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, has undertaken 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.”
Andrew, 49, renovated his house as well as fought a custody battle over the children for most of the first half of this past 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 is getting by for now on employment insurance.
“I’ve not been able to work since February. There’s no way to go to work every day if she’s in my care.”
The province funds up to two eight-hour shifts of nursing care daily in his home for the time being, but the uncertainties and financial stress are taking their toll.
He also has to take Isabella to Children’s Hospital for regular medical checks.
Every time Isabella leaves home for appointments Andrew must also have a nurse accompany them in case there is an emergency.
Isabella came home on her first birthday in mid-August, two days after her first birthday, and has 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. But her brain sometimes doesn’t send the signal to breathe, so she’s on a ventilator except for about four hours a day.
“She’s strong in some ways though. When I feed her baby food she doesn’t inhale it in her lungs; she’s got that figured out,” says Andrew.
“The long-term hope is that maybe in five years she can be off the ventilator during the day when she’s awake. But they don’t know that for sure, they can only guess.”
Andrew is coping with the stresses for now but doesn’t know what will happen when the money runs out or if the in-home support comes to an end. His employment insurance ran out last week and he’s waiting to hear if he’ll qualify for parental EI. Welfare is not a viable option and he’s not able to return to work just yet either.
He’s been reaching out to agencies such as Abby Dads and Encompass, and the provincial children’s ministry is also hoping that charitable organizations will come to the family’s assistance with food hampers, clothing and the like to keep the family going.
Reaching out for help is awkward for Andrew, who is used to being a private person, but he has come to accept that he needs it.
“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.”
Andrew does not want the public to call him at his home, but if anyone wishes to help out donations may be made to a trust fund for the family via the BlackPress4Good.com website set up for the Olmr family: https://fundrazr.com/campaigns/buRve
Andrew Olmr feeds his year old daughter Isabella at home, where she wears a ventilation tube all day long to help her breathe. Isabella requires round the clock care in her home to ensure she is breathing and not suffering any complications. (Kurt Langmann photo)