Over the last six years we've gotten a lot of conflicting and confusing information. At one point the doctors at the children's hospital considered Ebstein anomaly, but dismissed it. Ryan made them put IN HIS CHART that "Mom is not to be told" because it would have been caused by my lithium. Of course it was on the first page of his discharge papers that I saw before Ryan could hide them. I'm not a fan of lying to your partner, but sometimes it's a kindness, especially considering the circumstances--c-section, preemie, hormone craziness, postpartum depression, etc.
We've stayed with the children's hospital because they have his records from 2 days before he was born. They are good, but oh, the frustration. Getting an appointment is nearly impossible and if you have to reschedule--with ample notice--they ask you why. The appointment (echocardiogram, ECG, and meeting with the doctor) takes about four hours, which is always great fun with a small child. He has a special bag that we fill with snacks and books, my Nook with interactive children's books, crayons/markers, journal, blankie, "stuffy," etc. etc. etc. It's still an ordeal.
Our issues with the doctors start with they still don't know what's wrong with him. And every third time we have a new doctor who reviews his chart while we're in the room. This is when Buddy is at his least patient. We have bounced around from different teams, but we're currently with cardiomyopathy even though that's not really his issue. Or maybe it is. They say that it's left-ventricular non-compaction, but are open that it's not really it. His left ventricle is misshapen as are both atria, but it seems to be functioning moderately normally although there is definitely some abnormality with that as well.
Then they always want to do a Holter monitor. This is an absolute pain in my/Ryan's butt. First, you have to schedule two days off work--one for the appointment and then the next day to monitor him while he's attached to wires. Twice they told us that they didn't have one on hand so we'd have to come back the next day--and maybe they'd have one. Too bad about your schedule.The second time I just parked myself in the waiting room--with the boy--until someone returned one. The most fun was that they wouldn't look at the results until out next visit 3-6 months later. Once they found tachycardia--two beats--that Ryan was convinced was due to him tearing his leads off during naptime.
Holter monitor with a little cross-body pouch for the device that is about the size of a deck of cards or a computer mouse. Much easier than when he was little and we had to tuck it into his onesie.
Yes, we watch Wheel of Fortune.
So, we talked to Buddy's pediatrician and she referred us to another cardiologist. She did the basic tests (echocardiogram, ECG, Holter monitor). Thanks to Ryan spending an afternoon walking up and down the Medical Center to get his records, she was able to see the results from that weird Holter monitor and although she said it wasn't tachycardia it was something else troubling. So she wanted him to have an MRI. She said that it would probably be about three hours and since Mr. ADHD can't sit still for three minutes he had to be sedated. Thanks to videos on YouTube we were able to talk about what he was going to do. He did well although he threw up as he always does with anesthesia. We're waiting on the results and we have an appointment soon.
Right before the MRI--watch Wild Kratts and snuggling his new Scentsy bunny, Sally, who was a fundraiser for the March of Dimes and smells like pine, which is a surprisingly comforting scent. She has a little hat that they gave her so she'd look like the doctors.