We made it to Stanford!! We also went a on Grace's wish trip, but since I'm typing this from out of state, I'll post wish trip details when we get home.
Yesterday Grace had a heart cath with Dr. Perry. The cath lasted about 3 hours. Here's the info for surgery that will take place Thursday with Dr. Frank Hanley.
Dissection is planned to take 2-4 hours. They'll dissect a bit more than originally planned to be able to get to her upper lobe and outlying PA's. Conduit change as planned, hopefully 15mm or bigger. She has a 12mm now. 14 or bigger makes her qualify for the melody valve in the future if her valve fails but conduit still open.
Cath showed that her upper left lung lobe has no blood low. Lung perfusion test completed to see more in depth. Still no results. Unsure if upper lobe of left lung hasn't had flow long-term, or if this is a recent issue. The degree to which the lobe and arteries are damaged will give them an idea of timeline.. If Dr. Hanley is able to find a viable artery it's possible he can rehab and restore. Unfortunately, upper lobe on right has severe stenosis and is headed to the same plight. Thankfully, Hanley can rehab and fix, and also ensure no future lobe flow loss since he is somewhat of a pioneer in this situation.
The PA's are quite close to the Frenetic nerve. If the frenetic nerve is messed with, it causes a diaphragm issue. We won't know if there is an issue until extubation, and will be apparent if she struggles with breathing. Apparently, the frenetic nerve controls the up and down mechanism of the diaphragm, so the issue is that the diaphragm could be "stuck" in the up position, requiring another small surgery to stitch the diaphragm down.
Each PA repair takes about an hour and the conduit change also takes about an hour. Actual operation time will be 6-8 hours, but we won't see her for probably 10ish. Bypass time is expected to last 3 hours, and goal is to keep heart beating, since the VSD fenestration healed itself.
There is a concern about chylothorax since she's had it twice before. If it happens, well wait until she dries up. I asked about the JP drain that PCH sent us home with in the past only to receive stares. Their response? It's not in our medical practice safety guidelines to do that.
Also asked why we didn't know about the lobe flow issue before. Their politically correct reply? PCH probably only sees surgeries with her complexities maybe a few times a year, Hanley sees this several times a week. Its his life's specialty- he knows EXACTLY what to look for. I feel so comfortable with my decision to come here. Only upset I didn't know before birth so we could have avoided some of the complications that we've seen since operating at Phoenix Children's.
Grace is now running a low grade temp, I'm assuming because of anesthesia? Also now super junkie because of being intubated. Worried that surgery could be affected... Pray for health.