Here's an update on Abby. (2 Nov 2010)
Last Wednesday (10/27) the board of cardiologists and cardio surgeons met for their weekly review of cases. They discussed Abby and what was learned from her recent cardio cath. The outcome of ideas and opinions on what to do numbered nearly as many as doctors present. The one thing they all could agree on was to install a pace maker first. The pacer will get her heart into the correct rhythm and then we can see what would happen from there.
The biggest concern is that her lung pressure is way too high forcing blood to go elsewhere and not get the oxygen it needs. This is causing a reverse flow through her IVC which has formed a VERY large (about the size of a quarter) collateral vein to her liver, thus bypassing her lungs.
So.....first thing is to get a correct heart rhythm and see if any of this fixes itself. We HAVE TO HAVE lower pressure in the lungs in order to send more blood there (through surgery). Getting more blood to the lungs isn't the problem (several procedures for this), its getting the pressure down so the lungs ARE the path of least resistance. Otherwise she will just form collaterals to give the blood an easier place to go.
We will hear from OR scheduling in the next day or two to make the appointment for placement of the pacemaker. We assume surgery will be in the next 2-5 weeks.
They will have to partially split her sternum again to install the pacer so recovery will take some time and there will be a hospital stay. The pacer itself will be placed in a pocket that will be placed in the upper left side of her abdomen.
Three weeks to a month after the pacer is installed, she will go back for another cardio cath to see how the pressure/flow looks and possibly place some balloons or coils to force blood to the lungs if the situation looks good (meaning pressures have decreased as we hope).
After the cardio cath, it's unchartered territory. It all depends on how things go to this point as to whether there will be routine heart surgery options (Fontan), or if our wonderful medical team has to get really creative.
For now, our prayer is that correct rhythm of the heart (due to the pacer) helps reduce lung pressure so more blood can be sent to the lungs and therefore increase Abby's oxygen levels.
This is good! Although a bit overwhelming as reality sets in, these procedures and surgeries will really help Abby. James and I feel good about the options currently outlined by the doctors.
We talked with Abby tonight and she was so brave. She asked some great questions and was happy to know that she will soon have more energy. The look on her face, the tone of her voice, the questions she asked, were not those of a five (almost 6!) year old. She is being blessed with an understanding far beyond her age. She is an absolute blessing and we are honored to be part of her life.
Thank you for your love and support,
We'll let you know when the surgery is scheduled.
James and Summer