I couldn’t even muster the energy to write about Dolly’s eval yesterday. I needed to decompress from all of it. Today is a new day, and a full night of sleep always does wonders. I will say, right away, our Dolly did GREAT. I know there are other brave kids in this world, and she ranks right up there with them. She isn’t a fussy kid. She just rolls with the punches. This came in handy yesterday.
We arrived at Boston Children’s Hospital (BCH) after a two hour drive. Y’all the traffic here is unreal. But, that’s not anyone’s fault, so we were fine with it. I had my mom and dad with me. FullPlateGrandma and FullPlateGrandpa have been amazingly helpful on what has been a stressful week, and making that two hour (21 mile) drive by myself this many times may have done me in. We headed to the Cardiac MRI and Cath Lab. We were directed to the waiting room by a receptionist? scheduler? (I’m not sure) who doesn’t make eye contact. Ever. She just looks at her computer screen, grunts and points.
This is where my Midwestern self met East Coast blunt. It’s not the first time, and I’m sure it won’t be the last, but it’s slightly shocking when you come from the land of ‘bend over backwards’ and ‘shirt off your back’ ways. I can get pissed, but it takes A LOT to get me to be overtly rude. Not making eye contact with a patient’s family when I’m greeting them, well, that’s not what I’m used to. Right away it left us all with a slight sense of dread. Was this how this was going to go?
Yup. In fact, it went so badly for awhile that I put out a desperate mom Facebook message asking if this was an isolated incident or if this is what I should get used to from this hospital, the consensus was, it was a little of both. I am, culturally, unable to tolerate that level of bluntness, and this isn’t the ordinary at BCH. Multiple other things went sideways yesterday.
We ended our time there bridging the communication gap enough that I would be willing to entertain hearing their ideas on a surgical plan for our girlie. Honestly, prior to that, I couldn’t imagine handing her off to them. There was zero chance of my actually meeting the surgeon on this trip, and it may take him up to FOUR weeks to get back to our home Cardiologist with a plan. We’ll wait.
The good news of the day, which I never take for granted, is that her heart is functioning really well with the repair she already had. Her mildly leaking valves are still leaking…well, mildly, but we were worried that would worsen. It hasn’t. That’s a big deal. Overall, we have time. time to think, consider, and then move forward. A lot of families don’t have that.
I don’t ever take pics of Dolly’s right after a procedure. I wouldn’t want that done to me, so I have to respect that she might not want that either, but here she is back at the hotel, giving everyone a check up and watching…you’ll never guess…FROZEN…for what now must be the 50th time.
–FullPlateMom, who is happy just because her baby is happy.