Second Opinion

We have finally heard back from the surgeons at Boston Children's regarding Max's surgical plan. Yesterday Dr. Doshi (our cardiologist from CHOC) called me and spoke to me for almost an hour trying to explain everything and to make a plan. Ever since Stanford started mentioning a shunt surgical procedure I have been on a mission to find another option. If Max's oxygen saturations drop too low before he is big enough for Dr. Hanley at Stanford to do his full repair, there was talk of performing a shunt procedure which in my eyes would permanently damage a perfectly good blood vessel and would greatly reduce Max's long term survival chances. There was also talk of possibly doing another PA band surgery to loosen the band as he grows which in our minds is another surgery that isn't accomplishing much. The good news is we have a plan B from Boston if it comes to down to that. Dr Emani from Boston said when Max's oxygen levels drop too low that they would perform his complete repair in two stages. They would first perform the arterial switch portion of his surgery (switching the position of the aorta and the pulmonary artery),regardless of his size and that would buy them some more time. Then they would wait as long as Max's heart will let them before they try to close his very large and complicated VSD (Ventricular Septal Defect). Unlike Dr. Hanley, Dr. Emani doesn't believe the mitral valve will be compromised during the surgery but he does want Max to be bigger to have as much room as possibly to work internal to his heart to repair the giant hole.

After a long discussion with Dr. Doshi our plan going forward is to keep monitoring Max's oxygen levels on a biweekly basis. As soon as Max's saturations drop (Dr. Doshi thinks some time in the next two to three months) he will be admitted to CHOC for a cath procedure where they will reopen his ASD with a stent. During this hospitalization they will also do an MRI of Max's heart. Both surgical teams (Boston and Stanford) want to see an MRI so they can have a better idea what Max's VSD looks like in three dimension. After the MRI and knowing how big Max is at that time, both surgical teams should be able to give us a more definitive surgical plan.

Boston is an amazing place and ranked number one in the country for cardiology, but taking Max on a six hour cross country flight has its own risk. More than likely if we end up going to Boston he will need be life flighted on a medical flight so his oxygen levels can be monitored more closely. At this point in time there a lot of unknowns. How long until Max's oxygen saturations drop? How much extra time the cath procedure will give us? What information the MRI will give the surgeons? Which surgical center is best for Max? How many and which surgeries he will he need? 

Dr. Doshi will help us facilitate and determine what is best for Max long term. We are very lucky to have a doctor who takes the time to consult with these surgeons, takes the time to explain things to us, and happily puts politics aside and just wants what is best for our kid!