Yesterday the girls and I made our final Riley trip for pre-op tests. Bailynn’s heart was the subject of this visit. We headed out our door at 4 am and landed at Riley North right at 8. This is a really cool location, but definitely more traffic to navigate to get there.
We saw Bai’s cardiologist that we hadn’t actually seen since …… (I’m embarrassed!!!) 2009!!!! What!? We took a vaca from doctors for awhile and it is showing. We have had an EKG and ECHO since then, we just hadn’t seen him. He is one of the first doctors I remember meeting at Riley. He is one of the first people who gave us hope in her condition. He has always been positive about her heart.
Yesterday was the same, but I had to giggle. So, apparently, by now, we should not actually see the tubers in Bai’s heart. Here is why. When a baby is born with Tuberous Sclerosis, the rhabdomyoma (fancy name for the tubers) are the only ones they should ever have in that organ. Why? Your heart is a muscle that is in constant motion. The rhabdomyoma actually even decrees in size and disappear with time. This is the only organ, with TS involvement, that this occurs in. Bailynn, oh Bailynn. Bailynn still has multiple visible tubers. Her heart was filled with them, and they were huge, when she was a baby. So there they remain, visible. They are remarkably smaller now.
I still recall her cardiologist telling us that God had placed all the rhabdomyoma in just the right places, that a millimeter of a difference and she wouldn’t be here. Her heart was full of them, like everywhere else, but her heart worked. Yesterday, her heart is still in ship shape. No issues, no blockage, no arrhythmia, perfection littered with glittery tubers. I should explain that tubers have a glowing glittery kinda look in scans.
We move on….April 24th, here we come!
I talked to the Unicorn Doctor’s office Tuesday and they told me we will not know what time surgery is till the Friday before surgery. However, she is scheduled to go into surgery first. AKA – EARLY! I got the paperwork from Plastic Surgery. We have not got approval from insurance yet, but that is not my problem, that is Riley’s problem (I keep telling myself!).