Well I am once again in the all too familiar waiting room of the hospital as Lydia is in for surgery #9. She had an esophogram yesterday that showed leaking in both her upper and lower pouches so they want to go in to repair them and possibly put the lower and maybe the upper pouch back to traction to keep the esophagus growing. Every time she goes in, I always hope they’ll be able to connect her, but I don’t think we’re quite there yet. It’s usually a finding game once they go in.
On a positive note (which seems to be a rare statement when referring to the ever complicated Miss Lydia), I finally met with her main cardiologist here in Boston. The good news is she is still really stable from a cardiac standpoint and he doesn’t think she’ll need imminent surgery this summer. In fact, she may turn out to be one of the few tricuspid atresia kiddos that can skip the Glenn procedure and wait for the Fontan around age 2. She has a double superior vena cava (the big vein going to the heart) and since they’ll have to connect 2 smaller veins instead of one larger vein, they prefer for her to get a bit bigger so she’ll do better at the time of surgery. So far the holes between her atriums and ventricles are allowing for just the right amount of mixing of blue and pink blood and giving her a good balance. I also got the more positive note that there are a lot of early Fontan patients in their early 40’s doing well so maybe a heart transplant in her college years won’t be needed like we had feared. And the final good word is while she may have some early delays due to being hospitalized for so long, she should have a normal IQ and not have any delays in school due to her heart condition. This was another big fear of ours that at least for today is alleviated.
Now we just have to get this tiny little spaghetti noodle of an esophagus together and get this girl on the path to eating and we may actually be back in KC before the end of the summer. My new home goal for her is my birthday on Labor Day this year so we might actually make it!
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