Pacer Update

This is version two, the first one got deleted. I'm hoping I can recreate it!*


So the EP doctor just came by and had a long conversation with Christy and Stephen. He feels confident that a pacemaker will help Sydney. During the cath they discovered that Sydney's AV node is still working, so the pacer will only need to control the atria (top of her heart). The pacer will not put Syd in to normal sinus rhythm but will create "atrial kick" - gives the top of her heart some power and help generate flow. It's going to be a little tricky because Syd's junctional rhythm gives her a fairly fast heart rate (100-110). In order for the pacer to override that rhythm without forcing her heart to go ridiculously quickly, she may require medication to slow her natural rate. Dr. McDaniel thinks that it will be a bit of a process to get her where we want her to be, but that when we do, she'll feel better.

Because of Sydney's size, the pacer will go in her abdomen. The surgery will require her chest to be opened (through her original incision) so that the leads can be embedded in her heart and run down to the actual pacer in her belly. Because of the anatomy of her heart, her leads will be fairly shallow under her skin. Usually they're placed more deeply, but when they are, they tend to attract clots. With the anatomy of Syd's heart, if she threw a clot, it could go right to her brain. So, all that means that Syd won't be able to play contact sports. Enough force could break her leads and require another surgery to replace them...but she can still do ballet and that's her true love anyway : )

So that plan is to give her lungs a few days to relax, recover, and respond to the Viagra. The pacer surgery will be early next week and it will probably take a few days to recover and to get the pacer running optimally.

As far as the general plan, once Syd's body had recovered and adjusted to the pacemaker, they'll try to close the fenestration. Her sats probably won't be great until that gets done (probably 4-6 months from now). The pacer may or may not help with the fluid back up (distended belly, prominent veins in her neck, enlarged liver). She may just need to be on Lasix for a year or two until her body size grows into a better proportion with the size of her Fontan conduit. Lowering the pressure in her lungs with the Viagra should help too.

Ok, I think that's everything. Let's see if we can get this posted before it gets lost....

Josie