On the way home from Charlotte's appointment today, I decided I definitely needed to start some sort of means of communication to keep family and friends informed. I have been overwhelmed by the support and concern, and at times exhausted at the thought of all the phone calls/emails I have to make after each doctor appointment. I hope this blog solves the problem :-).
Today was our last cardiologist appointment before Charlotte's surgery in a couple weeks. I was prepared for this one, having been through 4 appointments with the cardiologist in the past. They are intense. The doctor is fantastic, I have complete faith in her. She is very knowledgable, and spends about 45 minutes with us each time discussing test results, talking about different options, and answering questions. She explains everything in a lot of detail, using diagrams and anything else necessary to help us understand. Over the past four months I have learned what a complex organ the heart is, and how lucky we are to be so close to one of the best pediatric heart centers in the country. At the end of these appointment I am exhausted--emotionally and mentally.
Today was no different. We started by doing a chest X-ray, which went much better than the last one. They used a contraption that looked like a chair to strap her up, rather than laying her on the table under sand bags. I thought she would freak, but instead she sat there with a big grin on her face. After that they weighed and measurde her--she is up to 11 pounds 12 ounces and 24.5 inches long. Unfortunately her weight gain has slowed down again, to 9 grams per day, so we now have to up the fortified breastmilk to 27 calories an ounce. This was a little frustrating to me, because she seems to be eating so well, but I know the reason is because her body burns so many calories due to the heart defect that she needs a little boost.
The doctor spent 45 minutes or so going over her tests that she had done last month. She had presented Charlotte's case to the cardiac board yesterday, and they all agree that it is indeed the best time to do her surgery. After her last ECHO, they found that her VSD (hole in between the bottom chambers of the heart) had shrunk considerably. This concerned them because she is still showing symptoms and she also have increased pressure in her lungs (also known as pulmonary hypertension), both things that shouldn't be happening with the size of the hole. To make a long story short, we did a barium swallow and a CT to rule out a vascular ring (which they did), and we also did a sleep study to rule out sleep apnea (which she also does not have). They came to the conclusion that there is not a cause to her Pulmonary Hypertension, so therefore is is Primary PH, not secondary. For some reason, in kids with Down syndrome they see a lot of cases of PH for no apparent reason. This causes some concern for surgery. It may extend her stay (we are looking at up to two weeks now), as well as the time she has to stay on a ventilator, until they are able to get the PH under control. They use a couple different drugs to shrink the vessels in the lungs after surgery. The good news is that most cases of PH are reversible if caught early enough, which is why they are doing the surgery now.
We are done with appointments until we meet with the surgeon on October 11th. We are trying our best to continue life as normal around here, for the sake of Katherine and Will. They know that Charlotte is going to be having surgery in a few weeks to fix her broken heart, and that she is going to be in the hospital for awhile. They are excited to have Aunt Kate come and stay with them and take them to and from school.
One month from now this will all be over. I will I could skip the next month, some days I am not sure I can handle anything else, but then again, what choice do I have? One day at a time.