Bobby's First Week

Bobby has Down Syndrome. There are tons of misconceptions about what that means - we had more than a few when we got the news last year. But we've since learned that nothing is preordained about his life or his potential. We know he will need extra help in his development, but he will achieve the milestones all children make. He will have strengths and weaknesses and loves and dislikes and from those he will construct the future he wants. As long as we help him when he needs help and get out of his way when he needs that, he has every chance to grow old living a happy and fulfilling life.

For now, our biggest concern by far is that Bobby has an AV-canal defect, meaning he has a hole in his heart where he should have tissue separating the 4 chambers. Because of the hole, blood that's been oxygenated by the lungs will not always get properly pumped to the rest of Bobby's body. Instead, the blood will slosh back into the right ventricle and get sent back to his lungs for another cycle. This makes his pulmonary system work extra hard.

Right now, he's in the hospital because, about once or twice a day, usually after a meal, the oxygen saturation in his blood drops to uanacceptable levels. He's breathing on his own the rest of the time. It might be that his lungs haven't completely developed. It might be that he has some acid reflux interfering with his eating. We're watching and waiting. He should be home early next week.

You may know that some holes in the heart heal by themselves. AV-canal defects do not. He will have open heart surgery in about 3 months, depending on how strong he is. In the meantime, we expect to struggle. Right now, Bobby is eating well. As time goes on, he will get weaker and may have trouble keeping his weight. At some point, as his lungs are stretched beyond capacity, he will have some fluid build up in his lungs - the early stage of congestive heart failure. That will have to be controlled by medication.

After his surgery, we should see dramatic changes. As scary as open heart surgery is, it's completely successful in 90%+ of cases. So, we have every reason to be hopeful.

In the meantime we are starting physical therapy to help Bobby build up his core muscles for all the fun that comes after surgery. His muscle tone is a little low so therapy encourages him to move his arms and legs; keeps him from favoring one side of his body over another; and all important for him - helps build the muscles of the neck and upper back. For us, therapy ranges from very fun (massaging his chest so that he grabs our arm) to easy (watching TV while he sleeps on each side for 30 minutes) to difficult (encouraging him to lift his head). Through it all he is good natured and forgiving.

For all the detail above, the reality is that Bobby is thriving in the face of his heart issues. He's eating great. He's mostly holding his own in the oxygenation arena. We're already 1 week down in our 12 week marathon to surgery. We just ask that you pray or think or hope good thoughts for Bobby as we want as much positive energy around him as possible as he navigates this hurdle.

For more information about Down Syndrome check out http://www.nads.org/pages_new/facts.html

For more information about A-V Canal defects go to http://www.americanheart.org/presenter.jhtml?identifier=132