Good morning and Happy Monday (blech)!
Most importantly, let me just say that the cardiology appointment from Friday was only full of good news. Some of you can and probably will stop reading there, but here's the nitty gritty. When we got there, our fave nurse wasn't in which normally spells trouble with Livvy. She likes routine and familiar faces but this new nurse let me put on the BP cuff and our first reading was a little high but pulse was good. We didn't have to do height or weight because of the recent one year ped's appointment so we just used those numbers on her chart. Pulse ox was a breeze, Liv managed to sat anywhere from 94-87 which is much better than I expected. The nurse practioner came in to do her assessment and ask us questions to which we voiced all our concerns about her cyanosis (blueness) going on and said we were looking forward to the echo.
Now here's where it gets weird...our Cardiologist always always always wants echos on these kiddos every 3 months if that's the schedule that they're on. But on Friday, there was no note anywhere for the echo. Since Brian and I requested it, they decided to go ahead anyway because we wanted to rule out a problem with the LPA or any collaterals that could have formed that might have been contributing to the change in color we've been seeing. The tech came in to get started and Olivia lost her marbles, no bottle, no setup where Mommy or Daddy were holding her, no IPad or Ipod was suitable distraction. She was beyond hysterical so the tech quickly bailed and she calmed down for a minute or two. I gave her one of the probes off the echo machine to play with and that calmed her so then I took another probe and decided to try running it over her chest and again - H-Y-S-T-E-R-I-C-A-L. They were calling her T-Rex because her roar could be heard through the waiting room and every exam in the clinic. She was a hot sweaty mess and so were we from just trying to calm her. After 50 minutes of this continuous roar, we all threw in the towel. Our card said he didn't need an echo anyway since the last one was so beautiful and the additional rationale was if she could sustain that kind of fight for so long against the echo without seeing any cyanosis then there wasn't anything amiss. I sort of had a "gee...thanks" moment for that one.
So we didn't necessarily get the peace of mind we were looking for, but we did get a better understanding of what sort of blueness is normal and what signs to watch for when it may be abnormal. It's all the same type of stuff from the interphase period between Norwood and Glenn. Decreased appetite, abnormal fatigue, trouble breathing, GI issues, they are all signs of cardiac distress and we just need to watch for any drastic changes in Liv's day to day. Otherwise, we can expect to see her a little blue when she wakes up from sleep and naps because of her resting heart rate during sleep but so long as she pinks up relatively quickly after she's up and moving there's nothing to worry about. The PT/OT assessment was very favorable and they asked us to get some toys at home that would actually be more challenging for her to help continue with her progression.
As for that darn echo, she's not getting out of it next time. In three months time, whether she is ready or not, it's going to happen. Our choice at that point may be to do it sedated which isn't desirable but necessary when you have a ravenous animal on your hands kicking, screaming and clawing for the nearest exit. I do expect that by then she will probably be walking and for a 22lb baby/toddler, she's already a force to be reckoned with so I can only imagine what it will be like next time. Yeeesh...can the Mama's get a little cocktail too when their kiddos have to go in for screening?