Sunday, March 20, 2011

Knots

Thursday I got a letter in the mail indicating Charlotte's cardiology appointment had been moved to next Friday (it was supposed to be in April). This concerned me for two reasons; they hadn't called and asked me if we were able to come in next week, and second, the appointment was now scheduled at the same time as her pre-op appointment. After calling plastic surgery, cardiology, and central scheduling, I was able to find that we needed to see the cardiologist before they cleared her for surgery, and she would need to have a sedated ECHO. At 5:15 on Thursday night I got a call asking if we could we come in the next morning at 9:15. Nice. This is when the knots in my stomach started.

I come by the "worry gene" honestly. My family is full of worriers, me included. The combination of this inherited trait and my past experiences at the cardiology clinic make for an uptight mom. I woke Charlotte up at 4:30AM for one last feeding, Kate came over early to entertain my older kids, and Charlotte and I  left for the hospital. Luckily the eating restrictions really don't seem to bother my laid back 9-month old.

Every time I walk into the Herma Heart Center I am reminded of our first appointment. Charlotte was 5 days old, we were 4 days into dealing with the Down syndrome diagnosis, and we were there to have a precautionary ECHO; just to make sure her heart was healthy. We were assured it probably was, as the pediatrician couldn't hear a murmur and there wasn't any sign of a heart defect on my 20-week ultrasound. At that time I knew nothing about cardiac problems in babies, so I truely believed those two signs pointed to a healthy heart. Oh, how hindsight is 20/20. Since that visit, the knots in my stomach start before I walk through the door.

I love our cardiologist, however she is very cautious and likes to be very proactive. She does a fantastic job of explaining things and making sure we understand what is going on. These are all great traits for a doctor to have; especially the one caring for my daughter's cardiac health. However, at times, she can make the knots in my stomach worse, as she explains all the "could happens" to us. This appointment was no different, as she came to see Charlotte before the ECHO and explained the reason for moving the appointment up. They are keeping an eye on Charlotte's mitral valve, because after surgery she still had some mild leakage, and if it gets worse, she could require medication and/or eventually another surgery to replace the valve.

The ECHO started an hour after it was supposed to, took an hour and a half to complete, and was done by a doctor. I was concerned about the length of the ECHO because they usually take about 30-40 minutes and are done by a tech. This made the entire time they were doing the ECHO a tad bit nerve-wracking for me; especially when the cardiac radiologist came in after the first doctor was done to get a few more pictures.

To make this long story a bit shorter, the ECHO was fine. The cardiologist told us she still has mild leakage, but it hasn't gotten any worse. The nurse told me afterwards that the doctor who did the ECHO was a first year fellow and this was one of his first ECHOs he had done by himself. Information that would have been nice to know before the procedure, it would have saved me quite a bit of worry.

The cardiologist told us she would see us back in a year (yay!)and to enjoy Charlotte and expose her to all our older kids do, as they will be her best teachers. I found this advice funny, because it is so true.

Learning to play video games....

Reading books with her siblings
Now that the stomach knots are gone for a bit, we are enjoying a laid back weekend. The knots will be back soon though; a week from tomorrow is Charlotte's finger surgery. I am looking forward to putting that behind us as well, and hopefully enjoying an uneventful spring and summer. A big 1st birthday bash is already in the works for June.

2 comments:

  1. I come by worry honestly as well. I had 'knots' in my stomach just reading your post!

    Communication would be really nice, wouldn't it? But, now you're on this side of it, yay! And some good news as well :)

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  2. So glad it went well, love the sibling shots!

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