Jan 19, 2018 Latest post:
Jul 11, 2019
On November 8th I sent out an email to some family and friends regarding a Dr. appointment that Jackie and I went to regarding her heart. This appointment was at Lurie Children's Hospital in Chicago with a pediatric cardiologist who specializes in the type of congenital heart disease that Jackie has, Ebstein's Anomaly.
This first entry includes that email so that you can catch yourself up on where we started. Please see below for that first entry.
November 8, 2017 I hope this email finds you all doing well and thanking God for his many blessings! As many of you know Jackie has a congenital heart disease called Ebstein's Anomaly (which is a tricuspid valve malfunction). The below info will update you on some new developments resulting from her heart disease.
To our family and friends,
As some of you know, Jackie and I were downtown today (Monday, November 6) for her appointment with the pediatric cardiologist who specializes in congenital heart disease. We saw the doctor at Lurie Children’s Hospital where Jackie had her first heart surgery (Children’s Memorial back then) when she was 18, and Parker had his heart surgery when he was born. Back when she was 18, she had an ASD repair which was to fix a hole in her heart. They were able to do that procedure through a catheter through the leg. She also has something called Ebstein’s anomaly which is a malfunction of the tricuspid valve which was the reason why we had the Dr. visit today.
Ever since Bryant (August 2016) was born, she has been experiencing symptoms such as shortness of breath, a heaviness of the chest, trouble breathing while lying down, among a few other symptoms as well. These led her to get some tests done with her regular cardiologist. The tricuspid valve problem she has causes blood to leak back (regurgitation) into the chamber of the heart where it is supposed to be leaving from and the pictures showed more of this leakage than the last time. He referred us to Lurie to see the Dr. we saw today because this is his specialty.
She had an EKG and ECHO done at Lurie as well as an examination by the Dr. After seeing her pictures, talking through her symptoms with us, and examining her, the Dr. let us know what the game plan is from here. What he saw in the pictures confirmed the deterioration of her valve, the regurgitation, and the enlarged atria (one of the top chambers of the heart). He also ordered more tests which will most likely take place at the beginning of January that will be a cardiac MRI, an exercise stress test, and a Holter monitor. He expects those will confirm Jackie's symptoms and what he has already seen in the pictures. If everything is concerned which he suspects it will, then she will have a pre-operation procedure (similar to her first surgery) where they will go through her leg again up to the heart to check for some other electrical problems in the heart and to take pressure measurements. He told us that we are on the road towards a surgery sometime in early 2018.. The surgery would be to repair or replace her valve, which would be determined based on these remaining tests and talking to a surgeon about the current state of her valve. The unfortunate thing is that because of where the valve is in the heart the only way to perform the surgery is an open-heart procedure, which of course makes the whole situation a little tougher to swallow.
Of course, this was not the news we wanted to hear, but it is news we were anticipating in light of her history and symptoms. The Dr. believes we are on this road to surgery and it sounds like there would need to be a lot of evidence contrary to what he has already seen in those tests for us to not intervene. Based on the deterioration of her valve and symptoms it really comes down to just a matter of time before this needs to happen since the deterioration will continue to happen and the symptoms will get worse. At the end of the day, we want to do what is needed to ensure that Jackie is healthy. It’s been a lot to process through today as we wonder what our lives will look like in 2018. We went to lunch after the appointment and we prayed, we cried, we laughed, and we put it all in God’s hand. We are thankful for great doctors who know what they are doing and we know will care for us as they did for Jackie before and as they did with Parker just four years ago.
Just this morning Jackie was reading on the way to the appointment the book Living The Cross-Centered Life, which we are reading for staff meetings at church. She read this Bible verse and question from the book as we were driving not knowing what we could expect at the appointment, “Yet I will rejoice in the LORD; I will take joy in the God of my salvation” (Habakkuk 3:18). The author then says that Habakkuk, “turned his attention away from suffering and fixed it upon the more vital issue of salvation. In your own times of severe distress, which are you more aware of – your suffering or your salvation?” Those were much-needed words of encouragement today and will be a continued reminder to us as we wait for more tests at the beginning of the year, and then a plan for intervention going forward. We are thankful to all of you for your prayers, support, and encouragement today and know we will be prayed for over these next few months.
We continue to thank the God of our salvation for his great gift of Jesus Christ and we seek to honor him through these next few months as we wait.