Bittersweet News

Before getting to the medical updates, make sure to check out the picasa site for pictures of Madeleine and the Bushey clan taken at her open house. We hired a photographer and there are tons of pictures. See the link at the top of the page and look for the folder entitled "July Party for Madeleine."

Okay, with that out of the way, here's the skinny on Madeleine. Kirsten and I took her to the hospital today for a check up with the pulmonary office and after much debate and discussion, we mutually agreed to admit her to the hospital. We're obviously disappointed that she's back in the hospital but we're also hopeful as we think we're getting closer to getting a grasp on all of her challenges. Here are the specific plans and reasoning for re-admitting her:

1) Determining cause and solution for bradycardia and tachypnia: Despite some limited progress, Madeleine continues to struggle with bradycardia (low heart rate) episodes and is also constantly tachypnic (she breathes too fast). Together, these issues pose some serious consequences: its never good when your heart rate drops and when she breathes too fast, she burns calories, thereby limiting her ability to gain weight. We talked at length about the cause of the bradycardia and tachypnia and all agreed that the primary culprit is reflux (i.e., food coming back up out of her stomach.) The unanswered question is why this is occuring. There are three possible problems: she has trouble swallowing, she has trouble processing food (slow motility), or something is pulling the food back up. The swallow issue is most dangerous as this can lead to aspiration of milk into the lungs and thankfully, the swallow study done a few weeks ago indicates that this isn't an issue. Furthermore, the milk scan done a few weeks ago shows that her motility is good indicating that food isn't sitting in her stomach too long. Therefore, it is likely that something is causing the food to come back up and the test that is needed to confirm this issue is a sleep test. Our nurse practitioner is fairly certain that Madeleine has an obstructed breathing passage and when it becomes obstructed, it creates a pocket of negative pressure, thereby pulling food up out of the stomach, causing her to cough and possibly block her breathing passage and causing bradycardia episodes. Additionally, since this food comes up with stomach fluid and it burns the esophagus causing pain and increased breathing. (As an example, think about when you burp and stuff comes up-- it hurts.) The sleep test will do three things: First, it will confrim that Madeleine does indeed have a blockage. Second, it will then determine the cause/location of the blockage. Its likely that the combination of her feeding tube and low muscle tone of the esophagus is causing the blockage. Finally, the sleep study will allow them to test out different solutions for the blockage. The two likely solutions are increased oxygen flow or increased flow via vapotherm, a high flow nasal canula that would blow room air that is very humid.

This may seem like a lot of information but it is actually very hopeful and helpful for Kirsten and I as we finally think we've found the cause and potential solution to the reflux challenges that Madeleine is struggling with. We're hopeful that the sleep test will be scheduled in one of the next few nights and we will provide the results as soon as they are available. Assuming we end up with increasing the oxygen and/or using the vapo-therm, the expectation is that as Madeleine grows, the muscles surrounding her esophagus will develop further and coupled with her overall growth, the incidence of reflux will greatly decrease, thereby allowing them to wean Madeleine. If this turns out to be the approach, its likely that Madeleine will be on an increased flow for at least a few months.

2) Test out alternative feeding plan: Given the number of bradycardia episodes and the belief that reflux is the culprit, the doctors want to put Madeleine on a continuous feeding pump that will replace bottle feeding in the short term. The thinking behind this approach is that a slow drip of food into the stomach will limit the volume of food in her stomach at any given time thereby decreasing the severity of any reflux episodes. Since any feeding change can pose challenges, the doctors would prefer to monitor Madeleine in the hospital for a few days.

3) Address oxygen saturation concerns: Madeleine was having a little difficulty keeping her saturation levels up. The doctors believe that the combination of her tachypnia and bradycardia events is the culprit and they think that the solution identified via the sleep study should help resolve this issue. Still, they want to resolve the issue sooner and expect to give her a steroid while she's in the hospital. They also will increase her nebulizer (breathing medicine) to every four hours just to make sure that her lungs are as open as possible.

4) Consult with a GI specialist: The doctors were convinced that once the isses listed above are addressed, we'll see a marked improvement with Madeleine. That being said, they agreed with us that it makes sense to work in consult with a GI specialist to ensure that our approach in feeding Madeleine makes sense and that they're doing everything they can to control the reflux.

Madeleine's time in the hospital shouldn't be too long: we're hoping that she is out by Friday and there is a silver lining in all of these details: Despite breathing too hard and having lots of trouble with bradycardia and reflux, Madeleine is still gaining weight: she weighed in at 7 lbs 4 oz. Assuming we can get the breathing and bradycardia episodes under control, it is entirely realistic that Madeleine's growth will take off.

That's all for now. We'll keep everyone informed as we learn more. We fully expect to report much better news in the coming days and weeks. Take care,

Brent