The Bionic Boy

Eddie is back in his hospital room and recovering well from surgery this morning. They finished up with him around 2p and his surgeon (Dr. Permut, below) and electrophysiologist both said things went very smoothly.

Hard to believe our little boy has a piece of hardware the size of a pocketwatch in his abdomen, but we're thrilled to have the peace of mind that comes with the ICD. It is standard process to test the device before they close him up and testing went perfectly. For those that are interested in what "testing" looks like, the electrophysiologist basically induces arrhythmia in Eddie's heart and then they let the ICD do its work. Sounds a bit scary and this kind of testing does introduce a cetain level of risk, but it's the only way to verify whether the device is functioning properly. And to top it off, they ran the test twice and Eddie recovered both times. Phew!

One interesting note . . . since these devices are made for adults and there is basically no market for them in pediatric cases, our electrophysiologist and the ICD manufacturer need to petition the FDA for approval to re-program the device to shock at lower maximum values. Again, sounds a bit scary, but the risk that he would receive the full charge is extremely small and they should be able to have him back in a couple weeks to upload the new code. They actually have to enter custom software code since there really is no off-the-shelf solution for what they are doing. Eddie is a true pioneer!

Eddie's incision looks great. We have to be careful for the next few weeks . . . no strenuous activity . . . but otherwise it should heal up ok. Obviously he's not too happy about the pain and discomfort that comes with being opened up, but he's doing amazingly well with only Tylenol. They've approved morphine for him, but so far he hasn't needed it.

We had the Infectious Disease, Anesthesia, and Social Work teams come by today to do their transplant evaluations. I think he passed :-) They're really just asking questions to determine if there are any hidden risk factors before they conference later this week. I know we still need to talk to the Physical Therapy team and a few others before heading home. The great news is that it looks likely that they'll let Eddie go home tomorrow afternoon! We're looking forward to being back home together as an entire family.

If everything goes well, we won't have any more overnight hospital stays until the transplant operation. We'll do our best to enjoy our bionic boy in the meantime!