We had a big day today, I finally got to hold Ruby!
It was a little awkward, but the nurses here are wonderful and made it as comfortable and smooth as they could. We snuggled for 3.5 hours, basically until my legs fell asleep. She was very calm, I thought they must have given a bolus of sedation for the transfer, because she just fell asleep as soon as I was holding her. But it turned out she was just happy to be held, must have felt safe after all this time laying in her bed.
They were able to take her oxygen down to 70 and she had good sats, high 80s. We had a chat with Dr. Foster about what is a realistic goal for Ruby's oxygen saturation while she's here, because we have people going all over the place with what they deem "acceptable." We agreed that 80s is good enough for now, where she is still shunting from right to left. As her right chamber relaxes the left side will probably do the shunting so the o2 level will be higher. But as it is they are saying it will be weeks until the right chamber relaxes so it's just not realistic to hold her back if she can handle a lower sat for a while. So the goal is to go down on the oxygen so they can start weaning her nitric. They took off more of her sedation today and are slowly chipping away at the rest of it.
She still has quite a bit of output from her chest tubes, but I'm not sure what that means. But they are keeping a close eye on them. She is still on portagen, but not sure if they'll increase feeds or not based on the chest tube output. They are sending off some of the fluid to test for chyle so we'll see how that goes.
She has a lot less fluid on today, a lot less puffy over all which is awesome.
Dr. Foster was concerned that maybe the amount of oxygen she has been getting could irritate her lungs (causing extra fluid), but it's unclear from the x-ray if that's truly the case. It is something that can happen when someone is on 100% oxygen for as long as she has been. Dr. Foster is being cautious and reducing the amount of oxygen should be a good test. If things don't go well with reducing oxygen she may get a CT scan, but that would probably only happen once she is off nitric since that makes it difficult to move her.
Dr. Horne figured the x-ray was showing dilation of the blood vessels in the lungs, and seemed pretty confident so that was reassuring (that is what all her meds are supposed to do). Because of this they are reducing some of the PH medication (that includes the nitric), he mentioned that too much too fast could be problematic.
Going home she can't be on prostacyclin or nitric, so she'll be weaned off those and she will stay on sildenafil and bosentan for the time being. One of those last two does the same thing as the nitric gas, so that should make weaning easier (really can't remember which).
She'll have a transesophageal echocardiogram (TEE) done tomorrow to assess the clot as well as repairs to her heart. If you don't know what a TEE is (lol), they sedate her and put an ultrasound probe down her esophagus in order to get a better look at her heart. It is something that they do post-op in the OR and they like to do them because it gives a look behind the heart and just a better view because there aren't ribs in the way... And if you noticed from the pictures,she doesn't have a ton of real estate to work with with all the hardware on her chest.
She is still dealing with a little bit of a fever, still doing lots of tests. I think most of the other tests from Monday came back negative, but something could have developed since then. It could also just be that we are putting too many blankets on her, or that she's just hopping mad about all the things sticking out of her.
Speaking of which, they gave her some sedation (propofol) this evening to calm her down, and it hit her like a ton of bricks and her BP dropped. Turns out they went too negative when they were taking off fluid today, so they had to add fluid (albumin) to get her BP up and put her on nor-epinephrine as well. She's good now thankfully. After a while here you have to pick and choose what you are going to freak out about, learning to keep calm and riding the waves- getting a good night's sleep helps and thankfully we have been most nights (for those who have been wondering).
We are hoping for another uneventful night tonight, so far off to a rocky start, but still hoping. They are retaping her breathing tube and supposedly are going to try to wean her off the nitric through the night. Taking cultures to test for yeast and also starting her on some antifungals just in case, there was some yeast in her tube.
