Just as I hit publish on my last post, the Nurse made her rounds again. She came to our little corner of the waiting room and the words that came out of her mouth left the girls and I dumbstruck. “The new VNS is in, they are closing. ”


I didn’t know what to say. I wasn’t prepared for that!

Not long after she walked away, leaving the girls and I in a state of stunned, another lady walked over and said Bai’s surgeon was ready to meet with us.




Lila and I walked down to the room to meet with (my favorite surgeon ever) as the other girls collected all their stuff.  Dr. walked in and explained what happened, this is the summed up version.

1st, Bai has a giant cast on her leg from last weeks surgery. They placed pins in her leg and wanted to assure its stability for the next few weeks. This was a bit of a pain for placement of her body combined with her limited motion in her back with her spinal rods. Her description of Bailynn’s placement on the operation table (with full reenactment) was hysterical. Much needed.

2nd, the VNS had slipped back down into her armpit area and the wire had spun and wrapped around it. Not a comfortable or correct location. Dr. was at first at a loss and looking for the VNS. She thought the wiring had much more damage than it did after further inspection, but due to the excessive amounts of scar tissue(that she compared to cement), it too her a while to deduce this. Once the old VNS was out, and diagnostics ran, all was felt to be fine with the lead connecting the VNS to her nerve. That being said, the lead does have breakdown on the sheathing. There are cracks, but not enough, per the VNS people, to change it out. It will, however, have to be changed out at some point. That procedure is much more extensive. Her surgeon has to delicately go through her neck, next to her jugular, to reattach a lead. The new VNS has a ton of upgrades, it is in and perfectly tucked under the left breast muscle. Her other VNS was found to be dead after removal and not diagnostics could be gathered from it at that time.  They had said a few months ago it had 2-3 years of life left (hmmmmmmm??).

Then we talked about a return appointment, recovery time, site care and were sent on our way. The girls and I found Bai in recovery, awake, unhappy, but fine. We loaded her in her chair and ROLLED OUT OF DODGE! It was an emotional roller coaster kinda day and I am running on hotel sleep – aka no sleep (Bai grinds her teeth. It’s super fun over night. )

The girls and I made it home around 3:30 and Bai has been snoozing in her bed since I got her there. I need a nap, but there is a lot of mom things to do, like cook dinner and do laundry. I am just glad to do those things tonight, at home, with my crazy girl(s).

This kid.

For Her.

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