Early this morning, I found out that I was not going to be able to leave the hospital to visit Clarity if I remained checked in because they were only letting me stay anyway for no real "medical" reason. Upon finding this out, I got myself discharged and by 7a, Q was picking me and my belongings up in front of the building. Although this made me end up being a little tougher on my body today than I'd hoped for, I did get to spend my first full day over at Children's. It's something to get used to.
They've been spending a lot of time trying to get her blood pressure (too low) and heart rate (too high) to stabilize. She tends to have them go out of the good range any time she is touched. The doctors increased her fluids and the amount of dopamine she was receiving, both of which seem to have helped. It seemed like we spent the whole day watching her blood pressure drop and then waiting for her to bring it back up. It has gotten much less variable this evening but still isn't as stable as we'd like it. The nurse assured me that there are lots off things that we can still be trying to get her to a happy place. Every time an alarm goes off it's a bit stressful waiting to see if she's going to fix it herself (thankfully, she usually does now).
They have also been working with the balancing act of ventilator settings - too much pressure and her right lung gets over inflated, with the risk of causing damage to her precious little lung tissue. Too little pressure and her blood gases get out of whack. They've been taking chest x- rays and blood gas readings all day, trying to get a sense of what effect each change they make has and trying to find balance. The latest results seem to suggest that they're honing in on a spot that may work well for her right now.
We did have the good news today that there is some left lung with gases in it visible on the x-ray now, which means we're not going to need to get it examined by scope on Monday.
One of the challenges of this part of the CDH battle is that the only "cure" for the pulmonary hypertension that is the real trouble maker is time. We're just trying to buy her time to let the vascularization improve and mature until she is stable enough for surgery. Then the real healing starts. We're trying to be happy with the fact that were now just over 72 hours in and she's not presenting any real crises yet.
Quentin and I went down to the chapel this evening and each walked the labyrinth there. I realized in my meditation that what I'm really needing to vision for her right now is not fighting but relaxing into being in this environment. I came to a warming blanket of white light holding her like warm water. She needs to just take it easy and trust. On that front I was self-aware enough to recognize that this was good advice for me too and helpful for her to have me modeling it at a spiritual level. At the center of the labyrinth I consciously tried to release the tension that I've been carrying as I move due to the post operative pain. I breathed deeper and let some muscles release and have felt much better since. I need to keep consciously checking in and making this happen. Q and I both agree that we need to make chapel visits a daily ritual when at all possible because we leave feeling refreshed with new purpose/direction. Afterwards, we took a walk on the grounds as the sun was setting. It was a great way to transition into evening, when so many negative thoughts try to coming creeping in. We've sat quietly with Clarity for the last couple of hours as I continue to sew the binding on to her quilt. Hopefully we'll both sleep well tonight.