Sloooooow Progress

(I typed this last night and forgot to post-- thus the references to yesterday)

It was a long and somewhat frustrating day at the hospital today but we did make some progress in determining what is the potential cause of Madeleine's low heart rate (bradycardia) and potential obstructed apnea. (See yesterday's update for medical details that led to Madeleine's admission to the hospital.) Before explaining further, I need to be clear about one issue: Madeleine is doing just fine. She is no different today than she was the past two weeks when we had her home. The only difference is that yesterday at a routine check-up, the pulmonologist downloaded data from Madeleine's monitor and was concerned that Madeleine may be aspirating formula. Since aspiration can lead to serious damage to her lungs, they decided to admit her and to determine what is going wrong.

The doctors have outlined three tests that they want to perform: a swallow test, a milk scan, and a sleep test. The swallow test was conducted today. During this test, Madeleine was fed barium fluid via bottle that is monitored via X-Ray. Essentially, the test looks to see if any aspiration occurs when the food is on the way to the stomach. After about 5 minutes of feeding, the doctor added a thickening agent-- rice cereal-- to the bottle and then monitored Madeleine's swallowing again. We expected to see some form of aspiration but were somewhat surprised to find that Madeleine didn't aspirate. This is somewhat confusing because Madeleine has had no episodes of bradycardia since being admitted to the hospital and the only change has been that Madeleine wasn't fed via bottle yesterday. Instead, the doctors wanted to avoid any potential swallow problems so Madeleine has been fed via her tube. The confusing part is that the milk scan and the sleep test, while potentially illuminating, don't seem logical to identify the problem. After all, she isn't having any problems when she is sleeping and she isn't having problems with food that she isn't ingesting via her mouth as evidenced by the fact that she hasn't had any issues since she's been in the hospital without bottle feeds. There's still a chance that either test could identify factors that contribute to the bradycardia but we're fairly certain that these tests won't identify the primary cause.

While we were confused for a bit, we think we figured it out. The problem with the swallow study is that it only lasts about ten minutes. They're reluctant to go any longer as the radiation that Madeleine is exposed to is fairly significant. However, the majority of Madeleine's bradycardia events occurred after a fairly lengthy feeding episode-- usually 20-30 minutes. Therefore, it makes sense that it didn't show up in the swallow study. In talking further with the speech pathologist, we're fairly convinced that we've been pushing Madeleine too hard to bottle feed and she simply needs some to grow and develop the muscles associated with feeding and swallowing. This reason makes more sense as we watched Madeleine bottle feed with the speech pathologist yesterday and she pointed out how Madeleine dribbles much of her food out the side of her mouth once she starts to show signs of fatigue. Given Madeleine's small size and her Down Syndrome, the theory is that her swallowing muscles become fatigued and if we keep forcing her to bottle feed, her tired muscles may prevent her from swallowing properly and may lead to aspiration.

Given the results of the barium test and the outlined theory above, the doctors made the following changes: they've added rice cereal to her formula feeding and have added reglan to her combination of medicines. The rice cereal will slightly thicken her formula making it less likely that Madeleine will aspirate. Additionally, they added reglan to her medicine regimen to see if this helps eliminate Madeleine's reflux. With these two changes, they re-started bottle feeds last night and hope that Madeleine won't have any bradycardia episodes. We'll see how this approach works and then we'll make future plans. Right now, we think its likey that they'll keep Madeleine through the weekend for observation and then Madeleine will undergo the milk scan on Monday. If all goes according to plan, we're thinking that Madeleine will get released after the milk scan on Monday. If this is the case, we're hoping to get on the road for Michigan on Tuesday. Of course, we'll re-evaluate the plan each day and we're not going to do anything that puts Madeleine at risk.

We'll definitely provide an update on Saturday night. Take care,

Brent and Kirsten