Here's the LONG of it, in case you missed it or want to know what's up with Team Taylor these days.
You may remember back in September when Henry spent the night in PICU in Lubbock due to an extremely fast heart rate (200-254bpm for 8+ hrs straight). We have spent months speaking with specialists and have finally arrived at a plan...
Let me back up a bit. We knew, before we ever adopted Henry, that he had a congenital heart defect called "Ebstein's Anomaly". We knew that it would likely result in a surgery at some point. Since we have been home we have seen his cardiologist every 6 months to monitor his heart. His cardiologist felt like we would most likely do surgery before school age but time would tell. He's one tough cookie, i tell you. I feel like the doctors are making stuff up sometimes b/c he's SUCH a normal little boy. That is, until i look at this echo images. EA is a malformation of the tricuspid valve. My heart usually skips a beat when i look at his images b/c it amazes me how normally he goes about life and play with his heart looking the way it does. Throughout his routine cardiology appointments the Dr. always asked if I had noticed any irregular rhythms. Did he ever look out of breath, was his chest visibly beating fast, did he complain of being tired or that his heart was "beeping" fast? The answer was always "no". Well in September that all changed, if you saw that story on FB you know it was a routine allergy appointment that caught his rapid heart rate. Since then we have consulted with several doctors around the country.
You would think with a RARE condition (one in 200,000+) when there was a problem, there would be a consensus. Not so much. There are about 5 surgeons in the country that operate on patients with EA on a somewhat regular basis. From our first cardiology appointment, we have been told "DO NOT trust this to just anyone, when it's time, go to the BEST!" Among the 5 surgeons, each one of them had a different opinion of what to do with Henry's heart. They ranged from "Get here tomorrow! We need to operate NOW!" to "Meh, I think he doesn't need surgery at this time but i'd need to see him in person to verify".
If you know me, you know making decisions is not my strong suit. I've made exactly 4 decisions in my life without hesitation and without looking back. Rob was the first, then followed Emily, Olivia, and Henry. As we looked at all the information we prayed that God would make clear what we needed to do and where. All agreed the Arrhythmia issue needed to be figured out and fixed and before we operated on his heart. There was a chance that the Arrhythmia was connected to the EA. Incidents of this particular type of arrhythmia with EA are about 1 in a million! From the very beginning Boston Children's Hospital rose to the top. They were consistent and answered all of my questions. When we met with surgeon's for the girls, when we met their surgeon, I knew he was the one. I just felt at ease with him. The very same thing happened with I spoke with the surgeon in Boston. I didn't feel rushed. I felt at ease. Boston is the best of the best in Children's medical care especially.. in cardiac care. We are confident we're headed in the right direction.
So on March 5th Henry and I will hop and a plane and fly to Boston. He will have a days worth of appointments on the 7th and then have a Heart Cathetarization & Ablation on the 8th. That will fix the arrhythmia. They will also do an MRI and 3D echo under sedation to get a really good picture of his heart. On the 11th Rob will join us and Open Heart Surgery will be on March 13th. After that, it will depend on Henry. If all goes well and according to plan we will be in the hospital about 2 weeks after surgery and then will have to remain in Boston about another 5 days before we are cleared to fly home. It's going to be an adventure, but that's what Team Taylor does, right ;-) ?
Please pray in these last couple weeks before we leave that #1 Henry stays healthy. He's currently got the runny nose/ allergy cough that just about everyone has right now but it HAS to get better and soon! Pray that we all can stay well! People are getting the flu left and right and i feel like sickness is tracking us down!
Pray for our nerves and for all the logistics of travel and care for our girls. It's definitely a lot to orchestrate, especially when there are SO many unknowns.
HUGE thank yous to everyone who has bought tshirts, prayed, encouraged us, or simply asked about what's going on. Cannot express how much that has meant to us!
I'll update here along the way so feel free to check back here!
With Love,
Jenn
