Medical Update

We took Kian to his cardiologist today since they postponed the valvuloplasty. Chas spoke to her yesterday and made it clear that we weren't happy and that she had set up these time lines.

She suggested that he should come in today to see how he is doing.

They did an ECG (and for the first time Kian did not fuss during the test). The very good news is that there appears to be no change in his condition. The doctors felt very reassured by the tests and did not feel the need to do another ultrasound (which disappointed Angie as she wanted to go to the "dark room"). Our primary cardiologist seems to think that Kian is still in a good place for the procedure.

We talked in a bit more detail about the procedure and things to watch for regarding Kian's health. I am slightly comforted after talking to her and greatly relieved by the fact that he is not substantially worse. But I still worry.

Now we just have to get to July 3rd and hope the procedure works for him. A few women on the stitching boards and elsewhere have mentioned that they know someone (a spouse or another child) who have a bi-cuspid aortic valve, have gone through surgeries and done just fine. I'm hoping that we'll be lucky too.

I'll be asking for some additional time off (just a few weeks and some days after that). We also won't be able to introduce Kian to his great grandparents. The Doctor suggested it would be best not to subject him to the stress of a six hour car trip. Hopefully, he will get the go ahead to travel after the procedure.

In answer to Janet's question: in the U.S. there is no agency that oversees hospitals and can make referrals to other locations. Hospitals are private enterprises and lots of medical issues (like where a person can be treated and sometimes things like what medications the doctor can prescribe) are determined but what type of medical insurance a patient has. With my insurance, we could go to the Cleveland Clinic, but the reality is that they probably could not treat Kian before July 3rd. They probably wouldn't even be able to see Kian by that time. We just have to keep all fingers and toes crossed and hope that things remain the same.

Angie told me today that she doesn't like going to Kian's doctor. While we were in the exam room waiting for the doctors to speak to us, she told us, "I'm glad we got to take Kian home." I feel terrible that we are so tense about this situation all the time. I know she is picking up on the stress, although she doesn't understand exactly what is happening. I hope she knows how much we love her. I tell her that everyday, but I'm just not able to spend as much time with her as I had hoped. I wonder what she will remember from this time in the future. Will she remember fun things like playing in the shower? Or will she just feel neglected and ignored after Kian's arrival?

For his part, Kian shows no signs of illness, which is probably part of what really frightens us. He giggles and coos at us even when he's not on the changing pad. He's a very cheerful little guy, so long as all basic needs are being met.

So that is our lives in a nutshell: we're trying to hold on to our versions of sanity and normalcy with our two beautiful kids.