Annual Cardiology Appointment

We made our long awaited, about a year, trip to the cardiologist today. We got up bright and shiny to make our 8:30am appointment. I think that scheduling that early is just cruel. Luckily, we had to go to my parents' house yesterday for Tami and my mom's birthday dinner, so the kids and I just stayed over. It also worked out nicely because then my mom could come to the appointment too and wrangle Conan while I attempted to listen to the doctor.



Everything was pretty standard. The nurse started by taking his blood pressure, which as always, took a few tries. It was about where it should have been though. The numbers were about reversed from pre-surgery, so that's good, I guess. She did a quick EKG, and I have no idea what it said, but nobody said anything about it, so I guess that's also good.



Dr. Puchalski came in, and the first thing out of his mouth was, "So what's up with all of the asthma?" I don't know. He has asthma. Then, "All the times you were hospitalized, where was that?" Well, all but one time, we were at Primary. I always made sure to tell the treating doctors about Miles' situation, and they always had said that they would inform cardiology. Dr. Puchalski said that what most likely happened was that they would send a note to inform that a patient was admitted for something unrelated but was doing well, so it probably would never make it to him. I will make sure that in the future I let them know that Miles' cadiologist has requested to notified with details that Miles is there. I think that on both my part and the hospital's part, we've probably been a little more concerned about notifying the pulmonologist rather than the cardiologist since it is breathing problems that he's always admitted for.

Anyhow, Dr. Puchalski does think that the breathing difficulties could be related to the Shone's syndrome. In his words, "Lightning does strike twice," meaning, I think, that having unrelated breathing problems could be a second strike. He continued to basically say that he wasn't going to ignore something that could very possibly be a real problem. He said that he definitely thought that we needed to do an echocardiogram, so that he could look at things.

He listened to Miles thoroughly and said that his heart SOUNDED great. Where his coarc was repaired, it sounded just as it should. His murmur sounded just as expected. However, he said that, even then, he could hear Miles wheezing in both front and in back. I've learned something throughout this that I had never realized having asthma myself. Asthma has a very specific wheez. It has something to do with the inhalation or exhalation. I wish I could remember exactly. The point is, Miles does have that, meaning that he does have asthma. He has more though that goes along with it that is not asthma. That's what we've been working with the pulmonologist and ent dept to try to figure out. I think that was what Dr. Puchalski was referring to when he said that.

Shone's Syndrome is characterized by 4 or more abnormalities, basically blockages in the left side of the heart. We've already taken care of the aortic coarctation (narrowing of the aorta--massive, massive narrowing in Miles' case). There were some slight abnormalities with his mitral valve (the valve that separates the left atrium from the left ventricle), but they were very minute. It is Dr. Puchalski's thinking that, if I understand correctly, that the mitral valve is not functioning properly, thickening and not allowing the blood to flow out of the upper left chamber of the heart. The blood gets backed up and leaks into the left lung causing it to be inflamed. I believe that what he was describing is mitral valve stenosis, but I don't remember him actually using that phrase. I have a hard time really concentrating on what the doctor's saying though, so he may have. I did go out and buy a couple of planners this afternoon, so I can record instructions for both of the babies. Believe it or not, this all makes a lot of sense to me (assuming that I interpreted things correctly). Doctor's always think that Miles has pneumonia because his left lungs rattles constantly. When he is given x-rays, his left lung always shows slightly cloudy but doesn't really show pneumonia. To date, the thought was that an underdeveloped swallow reflex was allowing liquid into his lungs, and that would inflame them. I think that this scenario makes much more sense. I've always felt like his breathing problems were related to his heart problems, and it's kind of nice to have that validated.......even though it pretty much sucks at the same time.

What Dr. Puchalski was describing wouldn't really be able to be heard through a stethoscope, so, as before mentioned, he ordered an echocardiogram, so he could actually look at his mitral valve. He said that he may even go as far as to order a cardiac catheter. I interpret that to mean, "if I cannot see what I assume is causing the problem with the echo, we'll do a cath to really make sure it's not happening". He sounds pretty serious about this all.

Dr. Puchalski did not give any idea of possible treatment. I think that that was probably intentional since we don't know if this is even a problem yet. Why worry about something prematurely. I would assume that if this is the problem, depending upon the severity, another heart surgery would be in order. I think in mild cases, this is treated with medication, but from what I've read, that's typically in adults. I don't know about small children. I think it would be more likely, that they would try to do a valve repair or replacement. Again, I have absolutely no idea. This is all just speculation.

Of course I always have concern for my baby, but right now, I feel pretty positive about everything. I do not doubt that this may be partially to blame for Miles' respiratory problems, but in a way, I think that that's a good thing. We've expected, from the beginning, that Miles' heart problems would worsen, requiring more surgeries. It's hard playing the waiting game. I would rather something be found now, at a regular cardiology visit, than have something terrible and unexpected happen in the future because I didn't realize that things were getting worse. So, I look at it this way: either Miles is suffering from mitral valve stenosis, we'll do what we can to correct it and his breathing improves-- or his mitral valve is fine, and we won't have to have surgery right away. Win. Win.

We'll know more on Thursday. We're taking Miles in for a sedated echo (echocardiogram with full sedation is pretty typical for little guys that can't hold still) at 2:30. I was instructed to make sure that Dr. Puchalski was there, so he could review the results and talk to us about further testing or treatment or whatever. I will try to get some blogging in that night, but I'm not promising anything. That's a pretty late appointment, and those things are so stinking long and tiring. I may just not feel like doing it. I'll get it in there sometime though, so stay tuned......