Yesterday was Jake's check-up with his cardiologist. We had the echo first and he did great as he usually does. He knows just to hop up on the table and watch his cartoons as they do the test. He also knows if he's good, the tech will give him multiple stickers which is a big motivator for Jake! The last three times we've had the same technician so he's comfortable with her as well. After the echo, we wait about 30 minutes for the doctor to read the results and then examine Jake. She came in and listened to his heart and then told me I wasn't crazy for seeing his symptoms again. Basically the membrane on his aortic valve has grown significantly since our last visit in November. The aortic valve controls the direction of blood flow from the left ventricle to the aorta. The membrane causes a narrowing of the valve impeding the flow of blood. This causes a pressure gradient between the left ventricle and the aorta. Last May when we found out he needed surgery the pressure gradient was measuring in the severe range. After surgery, it was non-measurable but last fall it slowly got larger again as the membrane grew. In November, it was measuring in the mild range and the doctor anticipated surgery in a few years. Three months later, yesterday, it is already measuring in the moderate category and the doctor feels that means Jake will be having his third open heart surgery this fall.
Why didn't last summer surgery work? When the surgeon cut out the membrane last time, he did not cut it out by the root because in doing so he could have damaged the heart's electrical system leaving Jake with a pacemaker for the rest of his life. By cutting out what the surgeon did, Jake had a 70-90% chance (depending which statistics you read) that the membrane would not grow back and that he would be healed. Unfortunately, Jake falls in the 10-30% category as the membrane is back. His next surgery (probably this fall) will be more intensive and the surgeon will have to cut the membrane out more deeply. This gives Jake a very large possibility of having to have a pacemaker installed. This is not ideal as he would have it his whole life and would place limitations on him. I haven't researched what those limitations would be yet because I'm not ready to know.
We need to pray that the next surgery takes care of the problem. Even with the deeper resection next time, it is still very possible that the membrane can persistently come back again. If that is the case then he would have his aortic valve replaced in hopes by removing the valve, we could permanently remove the membrane. That is a last resort because since he's so young, he would have to have more valve replacements as he grows since the valve would be artificial and wouldn't grow with his body.
I asked if Jake has any limitations until the surgery and the doctor said, "no." Ty then asked if he could join a soccer league, and the doctor said, "no." She then explained by no limitations, she meant he could play normally with other children and "jump on the couch and be a three year old." He does have limitations in that he can't get overheated or play in the direct sun. Organized sports would be too taxing for sure. She said swimming would be ideal as it would keep him cool so I guess it's a blessing we have a pool in our backyard :) When he gets overheated, it somehow can cause the membrane to grow faster. I guess this goes along with his sweating. I guess it's also a blessing we're having such a cool winter.
We'll go back in May for another check-up, the doctor is hoping that the pressure gradient will not be severe enough to require surgery this summer but that we'll be able to wait until the fall. So, that was the appointment…We knew things were worsening, and it's good he's not having surgery next month, but also it is taxing on me to constantly be watching him and looking for new symptoms. It's a definite balancing act to try not to worry but still be wise in watching for signs. The doctor apologized for never having good news for us. She will be walking in the Heart walk we're participating in which I thought was so sweet of her! We talked to her about It's My Heart (the support group) and she said she supports the group because it is so vital to get more information out to parents about congenital heart defects and to research more about CHDs. Part of the issue with Jake's condition is there isn't a lot of data out there to tell us what to expect. Dr. Altman said in 10 years we'll know so much more.
This makes the heart walk on the 20th so much more important to us! We have a big group of family and friends walking for Jake and we're so grateful for the support! If you still want to walk, let me know ASAP! Please just keep Jake in your prayers. Pray for healing…pray for wisdom for the doctors and surgeons…pray for God's perfect timing for the next surgery…pray for Jake's strength and energy level…pray for wisdom for Ty and me as we monitor Jake. Thanks for the prayers!
