a healthy heartSo, Georgia has Tetralogy of Fallot, a heart condition that typically has four components to it: a very large VSD (hole), Occlusion in the Pulmonary artery that leads to the lungs (gunk, or narrowing that makes it small), An overriding aorta (in the wrong spot a bit), and an enlarged right ventricle (from have to pump so hard to get blood through the narrow pulmonary artery). In the US, children have open heart surgery to repair TOF at around 3-4 months of age. Georgia's was repaired a few days after her second birthday.
So.....he said that they see lots of kids from other countries in their office who are repaired later in life (like Georgia) and that it is pretty common to see rhythm issues with them. Then after the echo (which he watched and directed, taking tons of notes) he explained what he thinks is going on.
A heart with Tetraology of Fallot (not the best but you get the idea)
He said it, " looks like, smells like and seems like a cardiac issue." Georgia's pulmonary valve (which was a mess before surgery and the surgeon did what he called a 'valvoplasty' to try to salvage it for awhile) is leaking significantly. We have known that this would happen at some point and have been surprised to have it stable for so long. Also, he thinks that scar tissue could be forming in her pulmonary artery itself (the Occlusion). This narrowing could be putting more pressure on the right ventricle and causing it to get out of rhythm.
He also said the "Big Scary" ( a problem that could cause her heart to stop suddenly often irrevocably) is still a possibility. Understandably, toddlers are very hard to diagnose and to catch what is going on. He said that she may be having very quick VTs (Ventricular Tachycardias) and not be telling us or that with the event monitor we may have missed the true episode itself that could have been what started what I have seen as the episode.
So.....we have a new monitor. Th is s looop monitor and Georgia will wear it all the time for the next month. It records continuously but there is still a button that you press when an event happens. Then Georgia's "Sheen" kicks it to high gear, it goes back and capture the 2 minutes before I pressed the button, 30 seconds of the current episode and then 60 seconds after that. She will wears this for a month but the staff will be talking to us frequently to let us know what they are seeing.
Georgia was a trooper, the kids constantly amazes me. The whole drive in she was asking, "Doctor's see my heart, boom-boom, boom-boom???" Then she picked up Doug's cell phone charger and used it as a stethascope and then an echocardiogram wand (rolling it on her chest). She marched right in to the office lifting up her shirt saying, "See my heart!!!!!!" to anyone who would listen :) During the ekg she kept whispering to Doug, "Daddy look....look" and pointing to the stickers like she was so proud of what she was doing and it was the coolest thing in the world. During the echo she chilled out and ate fruit snacks again making sure Daddy was watching this great thing that was happening to her!
The machine itself is a doozy. It has 2 ekg leads with long wires that connect to the machine, which has a holster & clip kindof like a cellphone. The nurse told us to be very careful with the connector because it breaks easily. Then she showed us the paperwork and the bill for insurance which shows a price of almost $800 if the machine needs to be replaced! So....we are now trying to figure out how to keep our wiggly, jumping girl who loves to twirl and be umm...free from clothes hooked up and not breaking the thing. At first we just tucked it into her waistband. That worked until she ran across the restaurant and it fell right off onto the floor! Then we tucked it in behind her in the carseat, and I looked back to see her swinding it from it's wires! So, we are reverting back to the wonderful world of onesies. Thankfully she is a little peanut and I found some that will work and she is tolerating them at this point...we'll see how long it lasts!
So, I feel hopeful that we will find answers, sobered by the idea of any little thing awry in her precious heart and like always, it will take awhile to process all of what we heard and saw today...
Yesterday was orphan Sunday at church and we got to share a little bit of our story. Today, I keep thinking again about all of the Georgia Meis out there who are waiting for families. Little ones with no one to hold their hand through operations, to advocate for them and get the best answers no diagnostic tools and advanced medicine to help fix what might be going wrong....oh how I ache for them. Would you take some time tonight to pray for them? Specifically that they would know that they are seen and known and loved by a God so big who sees them? That this is not the end of the road for them...eternity is so very close for us all. They may not have parents right now but we CAN stand in the gap and pray for them like we do for our own children. I have no doubt that our Georgia Mei is here because of the prayers of so many....there is just no other answer...I have seen SO many times now, this community come together and pray and mountains move, children find families, those on the brink of death miraculously thrive, money comes from nowhere to help bring a child home. It happens again and again and again...
"The prayer of a righteous person is powerful and effective."
Please help be their parents tonight.