Essential Medical Appointments

Once it became clear just how important physical distancing and flattening the curve were to curbing the spread of COVID-19 many of my son Kane’s medical and dental appointments were cancelled. The first to get bumped was a neuro-developmental assessment. Then we got a call from Kane’s pediatric dentist office saying his dental surgery was going to have to be rescheduled. Because of Kane’s heart, the risk of infection in his mouth is quite concerning. We’ve spoken with his dentist and we have her home phone number in the event that we notice any signs of infection. We have a plan A, B, and C. She also made it clear that Kane is her top priority patient once things have settled down and non-emergent surgeries are being scheduled again.

The one appointment that didn’t get cancelled was cardiology. I was a little surprised when Kane’s cardiologist called me herself to say she wanted to see Kane. She explained that because of his recent surgery and pacemaker insertion, and because she was going off on maternity leave, she felt this appointment was necessary. She went on to explain the precautions being taken at the Alberta Children’s Hospital. They had not had any cases of COVID-19 at the hospital and at that time they were predicting the peak to be near the end of April. She wanted Kane in during the calm before the storm…when they could keep him safe.

So on Tuesday, April 7th Kane and I drove in to Calgary. His cardiologist was right. It was eerily quiet at the Children’s Hospital. There were signs everywhere for physicians and healthcare staff, visitors and patients outlining procedures. Every one of the pay parking stations were covered with large back trash bags and signs explaining that Alberta Health Services parking is free right now.

As Kane and I entered the walkway between the parking lot and the main entrance of the hospital there were new handsanitizing stations set up and a number of staff, wearing all of their personal protective equipment, were there to complete health screenings on each of the people arriving.

As we moved further into the hospital, Kane looked around at all the people wearing face masks and asked if he could have a face mask, too. He seemed a little nervous. I had brought the masks Sam Welsh and her mom, Lorraine, had given me. But these were adult sized and clearly too big for Kane. A member of the hospital staff overheard our conversation and immediately offered to go grab a pediatric mask. She took the time to show Kane how to put it on properly, which was very much appreciated.

As we headed up to cardiology on the 3rd floor, we saw far fewer staff members then usual and no patients or families at all. We were the only people in the cardiology waiting area. Come to think of it we did not see another patient the whole time we were there.

Kane had all the usual assessments: an echocardiogram, an ECG, height and weight checks, blood pressure and blood oxygen…we talked with the cardiology nurse…we answered the resident’s questions. Then we got to touch base with Kane’s cardiologist.

We got good news! Kane’s VSD (ventricular septal defect, the hole between his two ventricles which re-opened during his September surgery) has CLOSED! This is awesome news!

And we got some not so great news…

Kane’s September heart surgery was a sub-aortic stenosis resection, due to a fibro-muscular ridge that had built up inside his heart. Our surgeon had to be quite aggressive. He was able to remove 95% of the ridge, as well as do a repair to Kane’s quadricuspid aortic valve. But there are risks with any surgery and although the surgery was successful it also resulted in Kane having heart block and a VSD. The heart block was resolved with a pacemaker three days after his open heart surgery. Now, the VSD has resolved on it’s own.

In case you were interested in seeing what Kane was watching, I have uploaded the two videos Uncle Brendan did for us to describe what was going on with Kane’s heart that required two surgeries and a pacemaker.

So what’s the problem now? Well, there are two.

1) The fibromuscular ridge is beginning to grow back. Kane’s cardiologist referred to it as a “nub”. She explained that some patients need to repeatedly have surgery to remove a fibro-muscular ridge, as they can grow back. F&*#

2) Kane also continues to have moderate regurgitation through his aortic valve (backward blood flow). This isn’t new. It’s also not new that Kane will likely need to have an aortic valve replacement at some point. His cardiologist is hopeful we can get him to his teenage years when his heart will be almost at it’s full size before this will need to happen.

So we wait.
And we watch.
This is the life of a medical family.
Not just during a pandemic.
A pandemic just complicates things.