Update...PICU day 4

Serena is feeling better today. Above are pictures of her sleeping...note the blood on her sheets...IVs. She lost her hand one tonight, and I said I'd agree to one attempt and if it didn't go then I insisted on giving her her steroid orally. It's the only thing she needs the IV for as she is taking fluids by mouth. Sure enough the attempt failed and we they held their end of the bargain and we gave her her steroid orally. She didn't lik it, but I'm sure would have chosen that over another stab. She doesn't have many vein options given all she has been through in her short life.
She had an appetite today which was good and was playful and talkative. She is still on 8 liters of pressurized O2, and is down to 60% FiO2, but there is still a lLONG way to go. They are still insisting on every hour neb treatments. Her chest x-ray showed lung (airway) collapse on the upper right side. We repositioned her and I gave her some chest PT. She sounded better this evening. So we continue to wait it out and hope for successful weans, albeit very conservative ones. We will be here for a few more days....
The swabs are all still negative, and could be final tomorrow because it will be day 5. We are not sure what virus this is, but it is nasty. We also figured out that Serena may be taking on signs of a true asthmatic (not just a chronic lung disease kiddo.) While in Maine we did have the fireplace going on Thanksgiving. This could have aggravated her, causing her reactive airway to "react" more as the virus took hold. Although she never coughed or showed signs of distress. But we are being cautious and the plan will be to go back to Flovent puffs daily to help her airway to not react and clamp down as it did with this virus.
There will be no more playgroups, and no Y baby room this winter season. We will have to balance her social interaction with keeping her safe from germs. It's going to be a challenge, because she loves to be out and about but this cannot happen again. It's driving us all crazy.
I miss Edwin incredibly, but don't feel right being away from Serena, as she has developed an intense fear of all medical staff and calls for me every time they come near. It's terrible to see her so frightened...wondering if they are going to inflictg pain on her little body.
We will see what tomorrow brings...