In the Shape of a Heart

Tomorrow we are headed down to UCSF for Owen's 4th heart cath. He has had one prior to each surgery, and Tuesday he is having one to close the fenestration (4mm slit) in his atrium that was created in his last surgery March 2014. Up until 2 months ago we thought it was closed, as the echo had also confirmed. When his oxygen levels were in the high 80's at his last appointment, his cardiologist Dr. Rivera confirmed that the small slit was still open, likely only 2mm. Owen's oxygen levels should be in the low to mid 90's, and most everyone else should be at 100%.

I found out some more details Friday regarding the procedure. He is second case, so will need to fast after midnight until the procedure, which is scheduled for around 12/1pm on Tuesday. This the longest fast he has done, as babies always have preference. The procedure is supposed to take 3-4 hours, and then he needs to lay flat after that. It sounds like we are going to stay the night. We were hoping to come home the same day but I don't think that is going to happen. Last time he was so zonked after sedation, then when he did wake he was out of it and had a skin reaction, and he ended up walking and talking later than we all expected. We did come home that same day last year but we left around 9pm. They are going to be inserting a device to close the hole, and looking for collateral veins to see if they need coiling at all to improve circulation. He had that done prior to the Fontan procedure.

The fenestration is a pretty common intervention during the Fontan surgery to provide a pop-off valve for pressure in his heart.




Up until Friday we weren't sure how they were going to close the hole. The fellow I spoke with said they use the same device that is used to repair ASD defects, more commonly known as a "hole in the heart" defects and repairs. It is a synthetic device, like this: (just now looking this stuff up for
my own knowledge as well.). It plugs the hole up, and will allow his circulation to "normalize" and his sats to come up a bit. The problem with the hole being open is that he is at a higher risk for stroke than normal. Clots, platelets, etc can get stuck in the small hole. He is on one baby aspirin daily, but it's hard to say how thin that really makes his blood. The stroke worry is always there, but with a known hole in his heart we needed to act on this as soon as we could get onto the surgeon's schedule. It was about 6 weeks out when we scheduled it. Important but not emergent... As he had been living with it open for almost 1.5 years whats another few weeks?

Kids like Owen have a very different circulatory system in part due to their affinity to form collateral vessels. If the circulation isn't working right they will make another route to get the blood across. We do this as well, our survival mechanisms are mindblowing. But with a standard heart and circulatory anatomy, an adult's incidence of collaterals is usually only present if they are attempting to avoid a heart attack by making their own way to bypass the blockage. Sometimes this works, sometimes it doesn't. In Owen's case his circulation is a little off as it is following pathways that have been surgically altered and/or not using ones that were there.

The children's hospital has moved since we were there last. It is a brand new hospital, closer to the bridge, so hopefully private rooms! We are looking forward to a new experience, hopefully quick and easy!

A refresher on his heart info: his original birth defects are Ebstein's Anomaly and Partial anomalous pulmonary veins. He had the BT shunt (1 month of age), the Glenn (8 months old), and the Fontan (3.5 years old). He has had 1-2 previous heart caths (we've lost track!) You would think we would be used to this by now but the reality is that it stirs up the emotions of each hospital stay.

You keep it up
You try so hard
To keep a life from coming apart
And never know
What breaches and faults are concealed
In the shape of a heart
Jackson Browne

That song just pulls at my heart strings its playing loud this morning as we are playing dinos and eating pancakes. 

~Please lift us up on Tuesday~ say a prayer, think a thought, or simply smile with Owen in your heart~