Arden's surgery went well. Before surgery Dr's knew of a leak on the right side of the heart between the atrium and the ventricle, but they said this usually repairs itself after the Glenn is put in place b/c the right side of the heart will no longer being doing all the work and is no longer "stretched out". They said they would watch the valve leek over the next few weeks to see if it heals on it's own or if they need to go repair it.
She came out of the OR on Thursday afternoon with her O2 saturation's in the 70's. Dr's said her levels until her next surgery (around the age of 3-5) will sit around the mid to high 70s. However, over the course of the last 24hrs, her O2 sats have sat at 58. She's been peeking around 61 but dips into the low 40s every few hours. Last night Dr's thought this was because her CO2 levels were too low of all things. They said b/c she is breathing over the ventilator that she is exhaling all her CO2 and her brain is telling her body that it doesn't need to oxygenate her blood that much since the body is so low on CO2. They allowed her CO2 levels to rise which also helped her O2 levels, but they can't find the "sweet spot" where her CO2 levels aren't too high or her O2 levels aren't too low. They aren't sure what to do.
Dr's tried extabating her two nights ago with no success, they believe due to the fluid she is carrying. So they started a lasix drip yesterday and added another diuretic every 12 hours to try and drain the excess fluid. Once her body doesn't have to fight against the weight of this fluid, they are hoping to try and extabate again. The nature of the Glenn, her new circulatory system, does not lend itself well to being on the ventilator, so they want her off of it asap.
Today, when we spoke with her team, they said there was a small effusion on her right side, but it was too small to try and remove it with a needle - they don't want to poke the lungs. So they are hoping the extra diuretics remove this. They are talking about doing another Cath to see if they are missing something if some answers don't show up today. She's not one to bounce back well after a procedure, so the thought of her going in for another one before she's stabilized from the last is painful.
She still has yet to eat since 6 hrs before her surgery, but I suppose since they are trying to keep her sedated, she doesn't know the difference. Dr's are struggling keeping her sedated as well b/c they give all they can and she still responds to stimulus through it. Due to her response, they keep paralyzing her so she can't respond. Dr's want her to let the ventilator do the breathing instead of her breathing 3 times in between each assisted breath, they want her to drop the extra fluid, raise her oxygen levels, keep her CO2 levels safe, have the leak close on it's own, and to get her off the ventilator asap.
Please be praying for all of the above, for Eric's and my health, for Elliot's understanding, and for our outside lives (bills, jobs, insurance, school, deadlines, etc) to be taken care of in our "spare time" without added stress. Thank you so much!
2 weeks ago