All about Taiko & his heart

We've a had a whirlwind of activity lately with Taiko. As some folks know, about a month ago he had some blood work done, and we found out that he has Trisomy-21 (aka Down Syndrome). As a result of that, he had a cardiologist appointment last Friday, where I thought we were just doing a cursory check to make sure there were no heart issues, as our pediatrician had never heard any murmurs or anything else to cause concern.

While at the cardiologist they did an EKG and an echocardiogram on him. The echo showed that he has an AV canal defect. There is only one treatment option for this: heart surgery. Needless to say I was shocked.

Our next step was to have a sedated echo so that they could get good, clear pictures of his heart to determine the severity of the problem. Our instructions were to be at Rainbow Babies (at the UH Case Medical Center) at 7am, and that Taiko could not nurse after 4am.

So today Yuta and I got up at 5, Taiko got up at 6, and we took him for the echo (and a big thanks to Hannah for coming over to stay with Taipan and Taisim so early in the morning). I was nervous that Taiko would be upset about not being able to nurse after waking up and while waiting for the echo, but he did great. There were a few moments where I know he wanted to nurse, but we walked around, and Yuta played with him and we got thru them pretty easily. The worst part was getting the IV put in, but even then he calmed down pretty quickly once it was in and we were able to pick him up. The nurses at Rainbow were fabulous and couldn't have been better.

They gave him Propofol, and I was able to hold him until he was out, which took only about 40 seconds. The echo took about an hour or so. Towards the end a cardiologist and a resident came in to take a look, and then they paged the cardiologist we saw last week to come and chat with us. While we were waiting, Taiko came to, and seemed happy and rested, though a little groggy.

So, here's the skinny that the cardiologist told us:

• Taiko has an atrial septal defect, and a ventricular septal defect. Both of these are holes between the chambers where there oughtn't be. The atrial one is bigger than the ventricular one
• His valves (I think two of them) do not close all the way
• Surgery will repair both defects and the valves
• Next Wednesday (June 8) the cardiologists & surgeon(s) will review Taiko's case, after which we will get a call to schedule an appointment with a surgeon and I think at that point they will also schedule the surgery.
• Surgery is likely to happen within the next month or two. Prior to surgery we will have to get some pre-op labs done too.
• There is a small possibility that they will want to do a catheterization (where they go in thru the leg to look at the lungs & heart) - they will determine if this is necessary during the review next Wednesday.

A lot of our surgery questions are still unanswered, but hopefully not for long - the surgeon will be able to answer them all when we get that appointment.

I'll post updates as we have them.

Oh - one more thing - Taiko got his first tooth on Tuesday!