December 28th: We ran into another glitch in our plan last night. Around 4am, Emmy started having further irregularities in her heartbeat (probably related to the Amiodarone infusion) so they stopped the medication, and obtained an EKG. Dr Puntel, one of her cardiologists, says we should proceed with the oral Amiodarone and monitor her to see if she tolerates the medication better in the smaller oral dose.
Otherwise, the plan for the day includes discontinuing her Sildenafil and lowering the dose of another of her cardiac meds as she had some pretty low blood pressures overnight. They will attempt to wean the oxygen to room air again...I am not too hopeful about that since we have tried and failed several times and now have home O2 tanks and a condenser sitting in our room. It never hurts to try though!
Evening update: Today pretty much went according to plan. Emmy started the oral Amiodarone, got a lower dose of the Captopril, and was taken off of the Sildenafil. Her blood pressures remain on the low side so we'll see what the cardiologist says tomorrow. They did not attempt to turn her oxygen off today so we will work on that tomorrow as well. She is tolerating her continuous feeds well and has only had a couple episodes of normal baby spit up today. I definitely feel like we get more good news than bad each day now...we're finally on the right track and transitioning toward home:)
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