Sunday is here, and along with that a lot of snow and cold. We met with a lot of doctors yesterday trying to figure out what Madeline was up to. The cardiologist came by to check her hear, they did an echo and said nothing really looked different, if it did it was only slightly better. We got the opportunity to ask a lot of questions but didn’t get any good answers.
I kept asking the pulmonary team if this had anything to do with the change they made in her vent settings about 3 days ago when this started, and their reply would always be something like “we’re going to try this..”. I am not sure how exact of a science pulmonology is but it feels like they’re just grasping at levers to try and if something doesn’t work, try a different lever.
Either way they decided to try steroids on her again. Steroids are a really effective anti-inflammatory and the hope is to really get her lungs as dilated and open as possible. If she responds well to that then they’ll try to aggressively wean her vent settings down. Last time they tried steroids on Madeline it didn’t go so well, but then that was 2 months ago and 2 lbs smaller.
Everyone here really understands now that Madeline’s only chance for survival is to get off the vent and get off as soon as possible. Without that her lungs can’t heal and if her lungs can’t heal, then the cardiac surgeons can’t operate. So I feel like they’re really working hard towards that goal.
For now, she’s doing ok. She’s not struggling or agitated, it’s just that her oxygen needs are really high and we still don’t know why. They have been able to get her down from 100 to 47 now, which is much better. Please pray that everything goes well with the steroid treatments and that we are able to wean her vent settings down over the next few days.
Sometimes I feel like I run out of ways to pray for her, but her needs are basic. Her left ventricle in her heart needs to grow bigger and her lungs need to improve so she can come off the ventilator. Thank you all again for your continued faithfulness in prayer and for sharing this burden with us. Please continue to petition God on Madeline’s behalf.
Shanker & Lisa.