Finally a plan . . .

This morning the entire cardiology team, including surgeons, cardiologists, transplant docs, etc... had their weekly conference at which they discussed Benjamin's case. Essentially, what it appears is that at some point in time prior to birth, most likely he suffered from a myocardial infarction i.e. heart attack. They initially thought that some of the abnormalities they saw on the EKG and echo could be explained simply by the enlargement of the right ventricle (right ventricular hypertrophy) secondary to the hypoplastic left heart. But, after more studies, they see that in addition to the hypertrophy, the ventricle is also dyskinetic, meaning it doesn't pump properly. There is an area on the posterior (back) aspect that appears to not be pumping at all, consistent with the MI theory. Because of this lack of proper functioning, it has been decided that it would not be in Benjamin's best interest to pursue the Norwood procedure at this time. The surgery would be extremely risky, with a high mortality, and would not serve him long term, even if he did survive the surgery.

So that leaves us with the difficult but only option of heart transplant. He will be listed on the transplant list by either today or tomorrow. He is eligible for an ABO incompatible donor heart which greatly increases the donor pool. Still, average waiting time is typically six weeks. Until they find a suitable donor, he will remain in the CICU, although he could be transferred to a telemetry floor if he remains stable. He will remain on the prostaglandins to maintain his heart function, and they will add medications or ventilation in the future as necessary. The cardiologist assures me that they could keep him stable for months if necessary, so I'll try not to panic with each passing day. In the interim, they will continue to monitor his right ventricular function with echos looking for any changes that could make the Norwood procedure a possiblilty. We will receive a pager as soon as he gets listed to alert us if a suitable donor is found.

Benjamin also had an MRI of his brain to evaluate a possible concern seen on a head ultrasound that they had done as part of his initial evaluation. For the most part the neurologists had no concern, but they will want to repeat it around 12 months of age. Hopefully be then, he'll be chasing after his sisters, if he can keep up with Meg!

We are going to go home tonight and spend some time with the girls, and leave Benjamin in the safe care of the CICU. Mostly, he just sleeps (kind of like Sophie did . . . ha ha) so we'll take advantage of this time while he is stable. We'll be back in the am and keep everyone updated as we learn more. We'd like to thank everyone for all the support and prayers we've received. And a special thank you to Don and Connie for staying with the girls and surviving two toddlers!