Good morning. Ruby's night was mostly fine but for another 'episode' where her oxygen saturation and blood pressure dropped. They were able to get her oxygen back up, then her blood pressure which took a couple hours to get really stable again. She has been in a good spot so far this morning and is looking a little less puffy.
We had a chat with the surgeon this morning too. He feels like she is slowly progressing, but it is like two steps forward, one step back. Right now her lungs seem to be doing well for the air pressure required to keep them inflated and to breath, but the blood pressure in her lungs is still a problem. He explained it pretty well to us this morning. So after the operation and while she was on ECMO the blood vessels in her lungs have become thicker and have a reduced flow. So when she has these 'episodes' those vessels are clamping down and making it hard for blood to flow through. It is the right side of the heart that pumps the blood through the lungs. The right side of her heart is the side that has been giving her trouble, but it does have enough strength to pump the blood during normal circumstances. When the vessels in her lungs restrict flow it has a hard time pushing the blood, which is why her overall blood pressure drops.
She is still on medication for this and the surgeon mentioned that now that her chest is closed up there might be a stronger medication that can be used. No definitive plan on that yet though. He also mentioned that this can sometimes be a permanent condition (pulmonary vascular obstructive disease). He said that he is cautiously optimistic that it isn't that for her since we are seeing improvements (if it was permanent we wouldn't see that). However, if that were the case the only solution is a heart and lung transplant, though he said he knows that she wouldn't be a candidate. That was hard to hear, but it is better that we know now just in case things come to that we will be somewhat prepared. I think the surgeon wants to do some diagnostic testing next week to get a better look at her lungs and the blood vessels in there.
The cardiologist was in this morning to do an echo. She said that Ruby's heart is looking pretty good, better than it was earlier this week. The repairs are looking good, mild leaking but that was expected. The right side is still a bit stiff, but that seems to be improving as well. They left a small hole when they repaired the AVSD so that blood could shunt between the right and left if needed. Right now, with all the higher pulmonary pressures, some blood is going from right to left and skipping her lungs which is why her oxygen saturation is generally a little bit low. That isn't a problem though and it was expected. When they do these repairs they have to balance the leaking with the stenosis/narrowing.
For now we are trying to focus on the improvements she has made, getting her chest closed up was a big step forward for her and she seems to be handling it well. We continue to pray for healing and we are so grateful for the nurses, doctors, RTs, cardiologist, and specialists who are taking such good care of her.
They are going to try putting her on her belly to help with her lungs. She may or may not like that, if not they will put her back.
