What a Day!

Today was definitely a difficult day with a potentially very happy ending. We learned this morning that based on additional review of last Friday's echocardiagram, the doctors were quite concerned that she had a chronic form of pulmonary hypertension that could impact the quality and even the length of her life. They believed that Madeleine's recent pulmonary issues-- recurrent pneumonia, aspirations related to her reflux, and her overall health-- could contribute to the hypertension readings that they got last week but they felt that her premature birth, her Down's syndrome, and her history of heart disease made it highly likely that her hypertension would prove to be a chronic form that would require medical intervention and could prove extremely serious.

As you can tell from the tone of this post, we learned later today that it is possible that Madeleine's pulmonary hypertension is already under control and quite possibly may be related primarily to her recent bouts with pneumonia and aspiration. We still have lots of tests to conduct and a lot of praying and crossing our fingers but today's echocardiagram failed to demonstrate any form of pulmonary hypertension. In fact, the results were so shocking that before the doctors told us the news, they ordered a second echocardiagram explaining that they didn't get good pictures of some views of the heart during the first test and wanted to see further pictures before providing a diagnosis. Both echocardiagrams showed the same picture-- that Madeleine's hypertension is resolved for the time being-- and we're cautiously optimistic that the worst is behind us.

You might expect the "but" that is going to follow and you're right on. Here's the caveat about today's findings: they're so shocking that no one is convinced that they're one hundred percent accurate and its fully possible that Madeleine has some form of hypertension and/or could develop it down the road. That being said, this was the best possible news we could get today and we're allowing ourselves a little bit of relaxation and enjoyment.

Our game plan for the week is as follows:

1) The focus for tomorrow and likely the rest of the week is to determine how major a role Madeleine's GI system plays in its relation to the lungs. They will conduct an upper GI test tomorrow where they feed Madeleine barium fluid and then X-Ray her to see the condition of the GI tract. Any abnormalities in the esophagus, stomach, and X-Rays should be noticeable on the X-Ray as the barium contrast fluid shows up very well. Additionally, it will be very apparent on the X-Ray if Madeleine aspirates any of the fluid. We'll also do a sleep study to check for blocked apnea and will potentially also re-do the milk scan and swallow studies that were done a few months ago. The reason for all of these tests is to identify madeleine's reflux issues and/or other abnormalities that can potentially cause Madeleine to aspirate fluid into her lungs. The ultimate goal is to avoid any further aspirations as Madeleine's recovery shows that her lungs can be drastically impacted by external trauma.

2) We'll continue to have echo cardiagrams taken every few days. The basic goal of these X-rays will be to esure that the pulmonary hypertension remains dormant.

3) We'll consult with the pulmonary team as well as with complex care to ensure that our path going forward takes into account her issues with pulmonary hypertension as well as the rest of her complex medical challenges.

In short: we have a long road to haul but we feel extremely fortunate today and we're hoping for a similar good day tomorrow. Thanks!

Brent and Kirsten