Hi everyone,
Last night we put up a post on the facebook group, and in some private messages, asking for people to pray for Ruby. Ever since she got off the ECMO machine her improvement has been very slow. The doctors are happy with her heart, but now her lungs are causing the problems. She has had a couple of 'attacks' where her oxygen saturation drops below 80% and then her blood pressure drops and the nurses have to act quick to get her stable again. It's pretty scary.
Her lungs still have high blood pressure in them and that needs to be reduced. That needs to heal. She is already on the maximum amount of meds they can give her for this high blood pressure (pulmonary hypertension). In addition to those meds she is on pain medication, paralytics, sedatives, and nutrition. One problem the doctors and nurses are encountering is that the total volume of fluids going into is pretty high, making it difficult to reduce her edema and keep her lungs dry. See one thing that will help her lungs work better is to not have much fluid in there. To that end she is on a diuretic that helps her pee; however if she loses too much volume of fluid (mainly blood) her blood pressure drops and causes her oxygen saturation to drop.
Oh, I forgot to mention that baby's with trisomy 21 (Down syndrome) sometimes require a lot more drugs to stay sedated and paralyzed. Ruby is no exception to this which is why her total fluid intake is so high, they need to give her a lot of drugs to keep her still. And she needs to stay still because moving around causes problems with her lungs and makes her oxygen saturation drop too.
That's where she is right now, in a balance of meds, fluids, and blood pressure all while hoping and praying that her lungs will get better.
We don't know yet if she improved much overnight. We haven't talked to a doctor yet today. She's in a precarious position because there isn't many options left.
Please please please keep praying.
Thanks