Today was a pretty stable day in terms of Clara's overall stats. They've stayed about where they were last night once we got things under control again. The bad news is that her pulmonary hypertension is getting worse instead of better and we're not quite sure why. The nitric oxide that we started yesterday was unable to work because she is not breathing in enough for the medicine to get into her lungs. So we started her on a new IV medication today (Flolan) with the hopes that it would begin to show some progress. It is a vascular dilator as well. Unfortunately, it does not look like it has worked either. We won't know for sure until the echocardiogram is repeated tomorrow morning, but it's looking likely that we will have to add a second medication to this one with hopes that it might work. The best treatment for pulmonary hypertension is ECMO and she's already on that and the pulmonary hypertension is still high. We've involved the cardiologists as official consults now and are hoping that they might have some new ideas that nobody else has thought of. Feeding has been put off again until after tomorrow's echocardiogram because we want to be sure that she doesn't have right-sided heart failure (another complication of severe pulmonary hypertension) before feeding begins. We are also hoping to start trying to dierese her again tomorrow with Lasix once again. This has not gone especially well in the past, but we have to try again because her lungs are filled with fluid which is also contributing to the pulmonary hypertension. I told the doctor today that I felt like this was a dog chasing its tail and we're not sure what problem to begin addressing first because they're all interrelated. He said that's exactly what's happening.
I'll be honest - I'm worried about our girl. This pulmonary hypertension is wicked. Even though I'm very thankful that today was calmer than yesterday and that she's remaining stable, I know that time is ticking, that this pulmonary hypertension must be addressed and that we're running out of options. I ask you to join us in praying specifically for her pulmonary pressures to drop and the pulmonary hypertension to resolve. Nothing else can move forward (including weaning off of ECMO) until this is managed. We've been so hopeful and encouraged that at least her heart has looked really strong throughout this process - I'm sad today to hear that we could be looking at heart complications as well. We're thankful for all the different medications and treatments that are possible and for the many different doctors who are racking their brains to come up with a solution that might work. But we know that there is still One Great Healer who has the power to open up her pulmonary tissues and allow her hypertension to drop, and give her heart the rest it needs from working so hard right now. As hard as it is, we continually hand this over to Him with hope and expectation for healing.
Hopefully we'll have a little more information tomorrow morning after the echocardiogram, the third pediatric surgeon has a chance to look at her and offer his consultation, the cardiologists have had a chance to round and weigh in and we see where we are with this first medication. In the meantime, please keep praying for Clara.
Things to pray for: Pulmonary pressures to drop and pulmonary hypertension to resolve, her fluids to drop and allow for room in her lungs for them to begin doing their job, the large team of doctors all trying to share ideas, communicate with one another and make decisions in Clara's best interest, and no further heart complications. Continue to pray for us as well - that we might not get too caught up in the medicine and be able to focus on savoring each moment with our daughter. And that we will remain faithful in trusting God, even when it is difficult.