Since her Glenn operation just over a year ago we have had these checkups to keep track of her progress towards the final "plumbing" operation, the Fontan Procedure. Along the way we discovered that Muriel is additionally suffering from Heart Block and will need to have a pacemaker installed - she will sport this bit of technology the rest of her life, or at least until she gets a replacement heart. Given dad's faith in the accelerating pace of technology, perhaps outpatient surgery in her adult years!
The past two cardiologist appointments were prefaced by suiting up Muriel in a Holter Monitor for 24 hours, which records her heart rhythm (ECG) and stores it for review by the cardiology team. A steadily declining 24 hour average heart rate indicated the pressing need for the pacemaker. Now we need to determine if she is ready for the Fontan procedure, such that we can do both operations at once. Ordinarily the Fontan would not be performed until at least 18 months, and she is just shy of 16 months now. An exploratory catheter lab has been ordered, to be performed 8/20/13, which should answer that question (as well as evaluate her previous surgery's success and look for stray blood vessels that may have grown in the meantime that may need to be closed off).
We made an appointment to meet Dr. Shetty, a Cardiac Electrophysiologist, who will be managing her pacemaker installation and followup maintenance. We meet her on Friday, 8/16/13. She will play a role in the timing of the next surgery based on her evaluation of the Holter results and any further tests she may require.
A final note - we learned that Dr. Cuneo has accepted a position in Denver and will be leaving at the end of August, which is very sad for us. Dr. Cuneo has taken the lead on Muriel's condition since several months before she was born, and we will miss her. We don't know who will be taking over her regular cardiology appointments yet, but should be making that choice soon.
I haven't posted for a year, so here is a recent ob-pic of Muriel... pre-surgery :)
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