As many of you know, today we flew from Arizona to Philly for Zoe's MRI and possible cath. Since prior to Zoe's hemi-Fontan surgery, her aortic arch and pulmonary arteries appeared narrowed on echo. During the hemi-Fontan surgery, Dr. Spray patched (widened) the pulmonary arteries. At the most recent cardiology appointment in Phoenix, not only did the aortic arch and pulmonary arteries still appear narrow, but her heart function also decreased from normal to low normal. Given the presence of all three issues, Dr. Stock felt more investigation was appropriate. Thus, our trip to Philly.
We were hoping Zoe would cooperate on the plane ride, and boy did she ever. At first we weren't sure...this was her face immediately after the pilot announced our destination; seriously, it was perfect timing.
After settling in, she did great. Zoe slept for three of the four and a half hours we were in the air. During the flight, we checked her oxygen sats and she came in between 75 and 80, while she was sleeping. Much lower numbers than usual (sending Stacey into a bit of a panic), but lowered sats are to be expected in the high altitude.
Once we arrived in Philly and cabbed to the hotel, we snuck out for dinner. Zoe, the CHOP diva, strolled around like she was back in her old 'hood.
On the walk home (in unexpectedly great weather), we were stopped by a Planned Parenthood advocate. After speaking with her for a few minutes, we learned she is a recent nursing graduate and accepted her first full time nursing position, working in CHOP's PICU. We introduced her to Zoe and told her she is a cardiac kid, here for some testing. She followed up with, "oh, what does she have...Tetralogy of Fallot?" We said, "no, HLHS." A concerned look came across her face and all she said was "oh." Yep, we know how serious it is.
We brought Zoe back to the hotel room and played with her, chased her around, tickled her and explained that she has a big couple of days ahead of her and she needs to be on top of her game. Tomorrow is Zoe's pre-procedure appointment which includes an echo, EKG, blood work, chest x-ray and exam. Friday is the MRI and potential cath. We won't know if a cath is necessary until after the MRI.
While we were playing with Zoe tonight on the bed, we told her if she convinced the docs that all she needed was an MRI, we would do whatever she wanted on Saturday and Sunday.
Let's hope it's a Zoe planned weekend!
8 Months Old!
5 years ago