A Better Day

After the difficult news yesterday regarding pulmonary hypertension, we're happy to report that we've had a very good day in the cardiac unit at Children's hospital. We're by no means out of the woods but Madeleine has as good a day as possible. When Madeleine was transferred to the cardiac unit last night, the goal was very simple: stabilize Madeleine's lung issues, administer oxygen to help treat the hypertension, provide steroids and additional nebulizers to help her lungs recover, and monitor her to see how she responds. We're happy to report that Madeleine has had a very good day and we believe that her status has improved throughout the day. She's by no means back to behaving 100% normal but we've played with her quite a bit and she's much more stable and happy than she has been for the past two weeks. This positive reaction doesn't mean that the hypertension is improving since the increased oxygen can mask some of the symptoms but it is a very good sign. (if her condition had worsened today, there would be more concern that her condition was being caused by the hypertension.)

The goal for the rest of the weekend remains the same and we're hoping that very little changes. As far as diagnosing the hypertension and its extent, our next update should come on Monday when another echocardiagram is conducted. There are two possible outcomes that we can expect on Monday:

1) The preferable alternative is that the echocardiagram demonstrates that the pulmonary pressure has decreased. If this is the outcome, we'll likely continue with the same course of action and will hope to wean Madeleine slowly from oxygen. The assumption will be that Madeleine's hypertension has resulted primarily from the trauma to her lungs caused by the pneumonia and related reflux/microaspirations.

2) The other alternative is that the hypertension will be largely unchanged (or possibly increased.) If this is the case, there are a number of courses of action that will be considered. First, the doctors will likely schedule a cardiac catheterizaion. This is a procedure where a catheter is inserted in Madeleine's leg and goes into her heart. The procedure is helpful for two reasons: first it is much more accurate in diagnosing the extent/severity of the hypertension than the echocardiagram. Additionally, during the procedure, the doctors can experiment with possible courses of treatment and can judge how effective the treatments are in reducing the hypertension. Additional courses of action would be determined based on the results of the catheter procedure.

That's about all we know right now but I'd like to add a couple of quick personal notes. First, we're still scared but we're feeling a heckuva lot better than we did 24 hours ago. One of our good friends suggested a month ago that Madeleine deserves a pair of pink boxing gloves as she continues to show that she's a fighter. Today is yet another example of Madeleine's fighting spirit.

Second, and much more importantly, we're floored by all of the support that we've received since receiving the difficult news yesterday. We can't say thank you enough to all of the folks who have read the blog, sent us text messages, called with concerns, prayed, the list goes on and on. Additionally, we don't say this nearly enough but the health care professionals that have helped with Madeleine are truly great and passionate people and we're eternally grateful for the fact that we live so close to such a great facility. We've obviously had some difficult days here at Children's and there have been days when we've been frustrated with the staff. Still, the vast majority of our experiences-- despite all of Madeleine's medical challenges-- have been positive and we can't say thank you enough to those that have aided in Madeleine's health challenges.

That's all for tonight-- we'll continue to provide reports as we learn more about pulmonary hypertension and Madeleine's condition. Thanks again for your concern and support.

Kirsten and Brent



Madeleine was transferred to the cardiac unit last night and the plan is very simple: Madeleine will get 2 liters of oxygen for the next two days and will continue her IV steroid treatments as well as a high amount of nebulizer treatment for her lungs. The goal is to ensure that Madeleine's lungs get cleared out as much as possible in the next few days. Further ensuring that Madeleine remain stable and grow, she is being fed via the "J" tube that extends into her small intestines and is receiving all of her food as well as her standard medicine for reflux and indigestion via the tube.

As far as the hypertension is concerned, we're not going to learn much more until Monday as the goal right now is to stabilize her, treat her lungs, and by Monday, enough time will have elapsed to compare Monday's echo results with the results from yesterday (Friday).