Busy day today!
Had a visit with our favourite two-year-old, which was so nice! It is hard to be away from Ruby for long, so we took turns.
This morning she had her echo down her throat, so that was interesting. They sedated her and stuck the line down her throat and did the ultrasound. They are able to get better views and confirm the previous ultrasounds.
They also took out her pacing wires and changed her dressing on the incision site. She had what they call a "vac dressing". It's hooked up to a little machine that creates a bit of suction that helps to drain anything from the incision and helps it stay dry to heal. And it basically shrink wraps the dressing on to the area. Now she just has a big old bandaid over top, and the skin has healed underneath, just has stitches still. So she just has that and the drainage tubes, which will have to stay for a while longer, due to the chylothorax, which they confirmed last night.
Basically they look at the fluid and do a "lymphocyte count" and if there is a number greater than 80 then they determine it is chylothorax. I tried to explain about this yesterday or the day before so I won't go in depth again... it's not a perfect science, they aren't 100% sure what's causing it. But the tubes will stay until the fluid stops coming. They've stopped feeds so her body will stop producing chyle, and so she is getting TPN and SMOF via IV (nutrition and fats). If the fluid stops they'll have a better idea of what is going on/what's causing the extra fluid.
Her sats have been all over the place today, started out good! They were able to wean her nitric over night. But her oxygen is harder to wean, and a lot of people are saying it's very common for kids with Trisomy21 to have this issue. They have a different way of exchanging oxygen in their bloodstream and often require high levels when intubate - it's not fully understood. Basically it will be slow going, that's just how it goes.
So she's been low to mid 80s most of the day, with some higher points sprinkled in there. They finally got her down to 85% oxygen on the vent because they had to go back up to 100% earlier in the day from yesterday's 70.
They've been playing around with the sedation to keep her comfortable and she's had a bit of a fever so they've been giving her some tylenol. They are treating the yeast in her tube so she is getting antifungals and some antibiotics as well just to be safe because they want to cover all their bases in case she does have a bug. They're going to try going back on some meds to help with her heart function, but they were able to give that one orally and have started her on some subcutaneous injections of an anticoagulant (blood thinner injections that just goes in the skin. Something we could do at home). They are hoping to take out one of her lines because it had a bit of build up in the end of it.
A bit of a frustrating day in some ways, but a good day in others. We figured that having that echo today really threw off her progress, because they had to fully sedate her and put the settings on the vent up. So we'll just keep that in mind and hope for better progress tomorrow. Ruby is on her own schedule!
Please be praying for Ruby as her slow process of healing continues. And for Thomas, Lizzie, and I as this time together, which has been great, reminds us of how much we miss being together ❤️
Morning snuggles ❤️
You can see her vac dressing is the little suction cup on top of the grey patch, and her pacing wires are in the little gauze bundles inserted under one of the band aids.
New dressing! Pacing wires are gone too!
Walked to Woozles! Picking out a new stuffie for the collection ❤️
"MAMA!"
Hugs ❤️
New stuffie for Ruby too ❤️
Her left arm IV came out yesterday, so holding her hand is that much easier! Has to wear a mitt so she won't pull her tube out though.