Wednesday Status

Audrey had a relatively stable overnight on Tuesday evening and then again on Wednesday. The last runs of arythmias occurred on Tuesday around 5pm although she has still had some occasional premature beats in the past day. She has transitioned once again back to the same two medications she has been taking at home although in a slightly higher dosage now. She has started once again drinking milk and we are attempting to get her to eat some solid foods such as cereals. We were waiting the results of her bloodwork that was sent off to Utah to analyze the level of Mexilitine in her system because one possible explanation could have been attributed to a switch in compounding pharmacies just two weeks prior. If her levels were very low then that could have given us a good cause to help explain Mondays events. The results were returned and her Mexilitine levels were good so that eliminates that possibility and we really have no true leads on the cause, outside of the fact that she has Long QT type 3 and it will always be a real possibility.

At this point our EP's are strongly recommending that we replace Audrey's pacemaker with an ICD (implantable cardioverter defibrillator) that would provide insurance against events such as Monday's by providing a shock to break the rhythm pattern. It would also operate as a pacemaker for the lower end pacing to ensure that her rhythm does not drop too low where LQTS type 3 triggers occur. At this point we are pretty comfortable with that surgery and the need for this device. The EP's are also recommending a cardiac denervation procedure that would ablate the nerves running to the heart that contribute to the triggering of these dangerous arrythmias. Although they are recommending that procedure there is quite a bit of research and discussion to take place before we are truly comfortable with this one. The ICD alone would provide some protection but we would not have done anything to try and prevent the incident requiring a shock. Our doctors and us are currently reaching out to some other leading doctors to discuss these recommendations.

If Audrey remains stable and continues to take her medicine correctly then the plan is to move us from the main CICU room into the step down unit where we are still monitored but would have our own room and a little more freedom. I believe Audrey would remain there for monitoring until we have a solid plan.

Thank you to everyone for the support, prayers, and well wishes. We truly appreciate it and feel very loved and supported.

I'll continue to update here rather than sending out emails and forgetting to send to someone or another.

-Mark