When we got Faith’s referral we sent it to the local pediatric cardiologist who had treated Princess. He looked it over and told me that it was a PDA, and that the perioral cyanosis we were reading about should not be caused by that PDA. However, if we can’t trust that the report is 100% accurate, he’d suspect there might be something else going on.
7 doctors/cardiologists all agreed. Her PDA should NOT cause that, but who knows. Go with your gut.
Last night, I was laying in bed and I was thinking about that report and how I could feel her heart murmur through her chest. I knew, from research, that a PDA with a high velocity would feel like a kitten purring under your hand in the upper left of the chest. That is exactly what it felt like, only it was more like an adult cat purring. You could seriously feel it. I was thinking about that and the cyanosis (we had not seen it), and how her orphanage had been known to MISS a VSD. I thought, is this the night that I’m going to look back on and think, “wow, ignorance sure is bliss.” That I will forever look back and think, that was before we learned XYZ and it changed our lives.
Yes, I tend to get a wee be pessimistic and melancholy late at night.
I was super antsy this morning as I sat waiting for the time for her appointment to get here. The appointment with our local pediatric cardiologist who had first reviewed her file for us. The same doctor who said, “I think that cyanosis might be from asthma or something.” We finally got in to see him (we were actually called early, but it felt like FOREVER). I held Faith on my lap, and he asked us what we knew.
We shared that the report said she had a PDA, and that I knew she still had it. He looked at me quizzically and I told him I could feel it under my hand. He looked at me a little strangely, then he said, “well let me take a listen.”
He put the stethoscope in his ears, put that end up on her chest and immediately looked up at me in surprise. His words were something like, “that’s the LOUDEST murmur I’ve heard in years!” He then said, “if you’ve ever wanted to hear what a PDA sounds like in a 2-3 year old, this is IT!” I reminded him of the cyanosis, and that her orphanage doctors had been known to miss a VSD. So, he told me he’d look carefully in the ultrasound.
He said that he was surprised I couldn’t hear that PDA with just my ears when she got upset…then she started screaming and crying. He understood then why I couldn’t hear it. ;)
She does have the PDA (duh), and it’s fairly large. He couldn’t get a good reading on it as it has a very high velocity of bloodflow, so he doesn’t know if has a narrowing or not for the coil to hang on when we do the catheter procedure. He did show us that she has some slight leakage around the mitral valve, and the mitral valve is flat instead of curved. The good news it is NOT prolapsed, so we’re just going to watch it. He actually thinks that when we close up the REALLY! LOUD! PDA! that it may correct itself.
I asked about the cyanosis and shortness of breath. He told us that her heart defect did NOT cause it at all, there was NO way. I asked him about pulmonary hypertension that one doctor mentioned to us, and that it had scared me to death. He said I am right to be scared by pulmonary hypertension, but he does not feel like Faith has that at this time. He talked about how if we couldn’t feel the PDA and it was large, that the blood flow would be more equal “pressure” and that more blood would be flowing through the pulmonary veins going into the lungs. However, since it was HIGH pressure (and extremely high because we could hear it so VERY well), that there was likely not a great deal extra blood flowing through the lungs that would be causing the pulmonary hypertension. (I may be messing that up some, but I think that is what he said to us.) He told us that it was a GOOD thing we could feel the PDA so well, which definitely made me feel better as it definitely feels odd to hold her and feel this strange “thrill” under your fingers where her heart beat should be (and yes you could feel the beat behind it as well).
This news was as good of news as we had hoped to hear (after realizing in China that the PDA was still actually there). :) As our local hospital does not do children’s cardiac surgeries, we were asked which hospital we’d like to go to for the Catheter procedure (and hopefully it will only be the catheter procedure), and as we know Vanderbilt Children’s from growing up in the South and ALWAYS hearing good things about it, and the fact that we have LOTS of friends (and some family) near Nashville for support we chose Vanderbilt Children’s. Now we wait for scheduling of this surgery, and we’ve heard it’s considered “elective” so it won’t be a rush to get it scheduled in the next week or anything, and to prepare for roughly 6 weeks.
This was taken in Guangzhou at the Botanical Gardens, 6 days after Faith was placed in my arms.