The Roller Coaster Continues

This was supposed to be a positive post about all of the progress that Madeleine has made since being weaned last week. Unfortunately, after a great day two days ago on Saturday, Madeleine took a turn for the worse yesterday. She's stable and okay right now but she had to be intubated (placed on a ventilator) yesterday after struggling most of the day with her oxygen saturation levels. The doctors aren't entirely convinced they know what is going on but they believe the culprit is her lungs and not her pulmonary hypertension. Here's what happened yesterday:

- Madeleine was breathing great all day Saturday and looked great-- we held her and played with her and talked with the doctors about when she could be moved off the ICU floor. The only factor holding Madeleine back was that she was still on high flow nasal canula. Additionally, Madeleine's X-Rays indicated that her left lung was collapsed/obstructed and the assumption was that she had a mucus plug (the technical term I believe is a snot ball or lugie) that was blocking her ability to move air in and out of the left lung. This sounds bad but while it isn't good, its fairly common when coming off a ventilator and the assumption was that it would slowly resolve as Madeleine's health improved.

- On Sunday, the doctors weaned the high flow from 7 liters to 8 liters and a little while later, the nurse noticed that Madeleine's oxygen saturation level was dropping.

- The doctors ordered an X-Ray at noon (the morning X ray was taken at 6AM) and were astonished with the results as the midday X-Ray showed that the left lung was fully ventilated but the right lung was collapsed. It isn't uncommon for different areas of the lung to collapse at different periods but this shift was extremely dramatic and shocking. In fact, the first assumption was that the X-Ray technician had flipped Madeleine over.

- The doctors and nurses began chest percussions (they use little rubber mallets and "pound" on Madeleine's chest and back trying to loosen up the mucus plugs. (It sounds harsh but Madeleine really likes it.) Unfortunately, this didn't work.

- They tried lots of other interventions-- they "tented" her with oxygen and even added nitric oxide to the high flow nasal canula. In the end, nothing could pull her saturation rates up so they made the decision to intubate Madeleine again.

Since she's been intubated, Madeleine has done much better. Both of her lungs are inflated and she's responded to the Chest PT (percussions) very well. Additionally, they've been able to wean some of her vent settings and support. In short: its going much better this time than the last time she was intubated. That being said, this is still a major step back and its going to be at least a few days before we will consider extubation.

Kirsten and I are obviously frustrated and disappointed in this additional setback. At the same time, we're encouraged by Madeleine's will to fight and we're fully expecting her to come back from this setback. (I sound like a broken record, don't I?)

That's all for now. I'll provide further updates tomorrow. Thanks again to everyone.

Brent and Kirsten

PS-- A belated congratulations to Rebecca and Lauren on completing the Chicago marathon on Sunday. Despite a persistent leg injury, Lauren was able to cover 21 miles before wisely dropping our (her knee pain was shooting into her hip.) Rebecca finished in 4:24, beating her target goal by six minutes! They're both an inspiration to Kirsten and I!