The Not-So-Good News

I have a whole slew of doctors appointments set up for Ewan, and we began our appointment adventures yesterday with cardiology. Ewan's file specifically says his heart is normal, so I had no reason to think otherwise. I made the appointment pretty much to check the box of specialists he'll need to see. I walked in with confidence that we'd hear, "Everything looks great, come back in a year!" The doctor listened to his heart, then ordered an EKG and echo. Even just getting Ewan to let the doctor listen to his heart was a challenge, so I didn't know how well those would go. Generally kids need to be sedated to get a good echo. I did my best to entertain him, and we had success with the EKG. He got a little nervous with all the wires hanging off of him, but I told him we'd take pictures to show Baba and all the kids at home, and he quickly became excited.

We went back for the echo, and I was nervous! The technician told me he'd need to lay down on his side and hold still for 30 minutes. He didn't love having to lay down, but he held my hand and let her do the ultrasound. Luckily they had a big TV with the Lego Movie (he loves any cartoon) on, so he was much more willing to cooperate. He held my hand and would look at me every minute or so to make sure everything was okay. He was such a good boy!

I was watching the screen occasionally, and at one point the color was on the screen showing red and blue. I figured that was indicating the oxygenated vs. deoxygenated blood. His red and blue were mixing, though, so I thought I must have had it wrong and was actually looking at something different.

When she finished the procedure 45 (longer than planned) minutes later, Ewan and I were both relieved! We had to wait for her to review the images and make sure she didn't need to redo any pictures. While we waited, we took selfies for Baba. Lucky Baba. I'm so glad the phone kept him entertained, though!

 

Once she got back, she had a bunch of toys in her arms. She told Ewan he did such a great job that he could pick any toy he wanted. Of course he had no idea what she was saying. He just saw a bunch of toys and thought they were all for him. Haha! She said he did such a good job that he could take whatever he wanted. So nice! He settled on a beaver Beanie Baby and a Hot Wheels firetruck.

The doctor then met with us again. He was very somber and let me know that Ewan has a sizable hole between the ventricles of his heart. A Perimembranous Ventricular Septal Defect. He said if this had been caught when Ewan was a baby, it would have been corrected and that would be the end of the story. Unfortunately it wasn't corrected, and it has had seven years to wreak havoc on his little heart. The left side of the heart is supposed to be the high-pressure side and pushes blood through the whole body. The right side is designed to be the low-pressure and just pushes blood to the lungs. When there's a hole between the two, sometimes the right side of the heart compensates by becoming high-pressure as well. This damages the lungs, and the damage is most likely irreversible. Because Ewan isn't showing signs of being under oxygenated (blue lips and fingers, etc.), the doctor's best guess is that Ewan's right chamber is indeed high-pressure. This causes pulmonary hypertension. Pulmonary hypertension is incurable. It is sometimes treatable. It is also sometimes terminal. To figure out exactly what's going on with his heart, we will need a cath procedure done. They will be able to know what the prognosis and course of treatment is once that's done.

Life has been a blurry whirlwind since I met with the doctor. I can't even believe this is happening. I have cried off and on for 30+ hours now. I scheduled his cath appointment for August 21st, so at this point all we can do is pray. We will be joining in fasting and prayer for Ewan this Sunday, August 9th, and invite any who are willing and interested to join us. Thank you to all who have already said they would. We are desperate to make sure Ewan has a long, healthy, happy life. He is such a part of us and I just can't imagine our life any way but together.