Logan Vandermeulen will turn five months old next week but the infant from Prince George has already had more medical procedures than many people will have in a lifetime.
When he was one day old, Logan had a pacemaker installed, which was later upgraded. This week he was put on to an artificial pumping device, known as a Berlin Heart, to keep his blood flowing. Now Logan and his parents, Jason and Veronica, are waiting for the next step - a heart transplant.
"The machines I don't think bug me as much, it's that uncomfortable look on his face," Veronica said. "I know the machines are helping and it's a little hard to see him like that, but I know it's helping him."
At one point Logan had a tube in his throat as part of a procedure and Veronica could see that he was crying, but the tube prevented him from making any noise.
"You just don't want to see your child, unhappy or sick on in pain," she said. "I think the pain is the worst."
Because Logan is so young, Veronica said it's difficult to know if he's hurting or hungry or wanting something else.
"It's a guessing game a lot of the time," she said.
Doctors first noticed there was a problem with Logan's heart when Veronica was 26 weeks pregnant. They scheduled a C-section three weeks prior to Logan's expected due date and installed the pacemaker the next day. Eventually, they were sent home.
"After the pacemaker he was doing quite well," Veronica said. "We had a follow up in November and they thought everything looked good - his heart was looking at little bit different, but there was nothing they were concerned about."
In December, Jason and Veronica began to notice changes in Logan's behaviour - but those could be attributed to an infant going through normal developmental stages. They became increasingly worried when Logan began to lose weight in January and he stopped feeding regularly.
At first, doctors suspected Logan had a bronchial infection, but after an X-ray physicians noticed Logan's heart was much bigger than expected. He was diagnosed with severe cardiomyopathy, basically his heart muscle wasn't working.
"Instead of pumping like it should, it's just quivering," Veronica said.
Logan received special heart medication and an upgraded pacemaker last month and once again he appeared to be doing better, so much so that the Vandermeulen's were preparing to return to Prince George.
Just before they were ready to come home, Veronica noticed Logan's breathing was becoming increasingly laboured and again doctors became concerned.
"His heart was against his ribs and it was taking room from his left lung," Veronica said. "You could actually see some of the bones in his chest stick out because his heart was just so big."
The decision was made to put Logan on a Berlin Heart as a temporary measure until a donor heart becomes available. The new technology includes an exterior valve to help Logan's current heart do its job and keep him alive.
The six-hour surgery was completed on Tuesday and doctors are now trying to make Logan as comfortable as possible as he adjusts to his new heart device.
Veronica and Jason waited in another room when the Berlin Heart was installed, eager to hear the news about their son.
"The waiting is the hardest, because you're always wondering," she said, adding no news during the procedure was a good sign that things were going well.
Now a new wait is underway as the Berlin Heart is only a temporary fix. Logan has been moved to the top of the national transplant list for a heart his size, but it could still be months before a suitable one becomes available.
Logan has responded well to the Berlin Heart and Veronica said his weight has stabilized after falling last month, but he is still less than the 12 pounds he weighed before Christmas. She's thankful he was born weighing seven pounds because it gave him more strength to get through all of the procedures he's endured already.
While Logan and his parents wait in Vancouver, his two-year-old brother Elias has stayed behind in Prince George and is living with his grandparents.
"It's nice that he's not here because he's getting the attention that he needs," Veronica said. "At the same time it's killing us that he's not here and we can't spend time with him."
Logan's ongoing medical trials have been exhausting for Veronica and Jason, but they appreciate all the support they've received from family and friends. Jason's employer has been very co-operative, although he's expected to go back to work early next month.
Veronica said she and her husband have found going on daily hour-long walks have been a good way to clear their mind so they can focus on Logan's care when they're at his bedside.
The David Foster Foundation has helped the Vandermeulen's with the day-to-day expenses like accommodations and food as they wait for Logan's transplant, but friends and family in Prince George have launched a fundraising drive to help cover some of the medical costs the family will incur. They set up a trust account at CIBC (account number 08950/84-78791) in trust of Mandy or Brenda for Logan. The account will be open for another 60 days.
Veronica said the money raised will help cover immediate medical expenses, like prescription medication, as well as future costs that will come up as Logan continues his recovery.
Since the average transplanted childhood heart lasts about 15 years, Logan will likely need another transplant before adulthood and possibly more after that , but Veronica is hopeful medical science will continue to progress during that time so that the hearts can last even longer.
Financial help is welcome, but Veronica said it's just as important for people who are willing to become organ donors to sign up through B.C. Transplant.
"We're really wanting people to become organ donors, because it saves lives," she said.
People can register up by visiting www.transplantbc.ca or receive more information about donating organs by calling 1-800-663-6189.
