Ruby had a pretty good night!
She had a little dip in her sats before we went to bed. They had positioned her on her right side and noticed she was a bit decreased in the volume on her lower right lung when they moved her, so she was starting in the 80s for a bit. Things leveled out after they repositioned her and did a bit of adjusting on the vent. They had put up her O2 to 80 and adjusted her PEEP to 10.
They were able to wean back her oxygen to 60 through the night, but will probably keep the PEEP as is to help the right lung stay more open.
Dr. Horne was by and seemed happy with her numbers. He consulted the head of the pediatric cardiac surgery in Toronto yesterday, who seemed to think that going the medical course of treatment would be the best idea for Ruby. He definitely wants to go ahead with the tracheostomy this week and was happy with how her incision is healing. Over all they seemed a bit more positive about things today, though he is still saying it could be weeks to months for the treatment to work. We are okay with giving her as much time as she needs, we just want her to get better.
An ENT fellow came by yesterday to talk to us about the trach and they can do it. It will be challenging where Ruby's neck is so short, but it is doable since they have specialized tubes for babies her size. We are hopeful that it will go off without a hitch!
She has been peeing more and has taken a lot of fluid off. She was negative over 150mls last night, so that's a nice change for sure! They want to wait a bit longer to start feeds since her venous pressure is still so high; they don't want her chylothorax to get out of control again.
She does have a lot of air trapped in her belly and bowels and probably some fluid too. We are hoping she'll have less of that issue once she has the trach done... she's swallowing air around the tube since it goes through her upper airway. Once the tube is further down she shouldn't have that problem anymore. She seems uncomfortable when he belly is compressed, so she needs to get some good toots out. She has been pooping though!
She'll have another echo later today just to check on her heart and they did check her lungs this morning with an ultrasound, the right one is still quite wet, and there was a bit more fluid on the left side but thankfully it started draining more once Tom was holding her. If it wasn't draining she may have to get a new chest tube inserted.
We are tired this morning and it's been busy here, but we are hoping and praying for a good day!
Our prayer for today:
Lord, watch over Ruby's life, guard her and protect her from all the powers of darkness. We thank you for progress, and we ask for more! We put our hope in You and Your healing power. We pray that Ruby will have a long and abundant life, that she will make it through this and all of the challenges ahead. We thank you for your Love and care for her and that You are working everything together for her good. We pray strength, and protection and life over Ruby today. In Jesus name,
Amen.
TLDR: Slow but seemingly steady improvements. It will be a long haul but we are feeling hopeful. She'll probably get a tracheostomy this week. Peeing lots! Needs to fart more.
