Malachi’s Heart

17 Mar

We had our first appointment with his cardiologist yesterday. We received good news and bad news. We are going to pray for better news once they do the cath next week. We brought Josiah with us to the appointment. Neither of us were ready to be separated from each other after 2 weeks apart. He did ok for a 2 year old at a 2.5 hour appointment. I am not used to how much 2 boys eat and I did not bring enough snacks and drinks. Luckily, their office had some goldfish and bottled water for the boys. Here are some pics of them together. I got out the lollipops at one point too. Josiah still isn’t sure if he likes them.

We were late to our appointment because having 2 boys is a lot harder than 1. I am going to have to start planning better. The appointment was at 11 and we didn’t leave until 1:45. She literally talked with us for over 2 hours on what Malachi’s heart looks like, how it is functioning, why he’s a miracle and why we need to start fixing it sooner than later. Josiah’s nap time is usually 1 so he was starting to crash but overall I think they both did well.

The cardiologist drew us a picture of a healthy heart and Malachi’s heart next to it. The good news is that he has 2 fully formed ventricles and 2 fully formed atria. What we’ve been calling TGA is true, the aorta is where the pulmonary artery would be but there is no pulmonary artery (it never formed). He has pulmonary atresia. He will need a unifocalization procedure on his major arterial pulmonary collateral arteries (MAPCAs) as well as a shunt. The blood flow that would go through the pulmonary artery has been handled instead by collateral arteries. These are smaller and there are many of them. Because of this he would not be a candidate for a heart transplant. 😔 While I never want him to have to go through a transplant it is hard to hear that he wouldn’t even have the option if ever needed.

The next step is for him to have a catheterization next Friday. We meet with the doctor on Thursday to discuss the cath and then he will have it done at 9am Friday. He will need to spend the night and we will go home the next day. This cath will tell the doctor’s hemodynamics (pressures and flows) which will help determine future surgeries.

When we arrived home yesterday he clapped and cheered when he saw our house. I think he is still unsure what “home” is. He sure was happy to be back.

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