Oliver’s Story

Site created on January 19, 2019

Oliver was born with congenital heart disease, he endured many ballon cathertizations over the years—one as early as the first day of his life. Born with several heart defects, they all were resolved with medicine or time. We were blessed to have so many defects, as without each of those, his heart wouldn’t have been able to handle the pressure and his arms and legs wouldn’t have fully developed. We have one gnarly unicommisural aortic valve remaining that needs to be fixed. If you know someone who has a valve repair or replacement, you may know, there is no ‘fix’. It is all temporary until the ‘fix’ doesn’t work anymore, and then another repair or replacement will occur. Science and technology move quickly, however, most adults and kids need a new valve about every 10 years for the rest of their lives.

In November 2018, at a routine cardio check up with Dr. Tantengco, (so that Oliver could be cleared to have dental work (must be done at children’s, under sedation in cardiac OR to prevent bacterial infection in the heart)) his ECG looked different than before. We were asked to come back in for an EKG, which confirmed what she suspected and told us that it’s time to have surgery to repair/replace his valve around spring. We left and she reached out to Oliver’s other cardiologist and to make a plan.

One week later, we traveled to Boston Children’s Hospital to have a higher level echocardiogram to take finer and more detailed measurements.Dr. Brightbart confirmed the news for surgery and indicated it should be done sooner than later. We discussed repair and replace options and decided that the Ozski Procedure is the best option for Oliver. We were excited to discover that the surgeon, Dr. Baird, pioneered this procedure on pediatric patients in 2014, and he is on surgical staff at Boston Childrens’s Hospital!

The surgical date of 1/23/2019 was set just before Christmas and preparation began. Since then, Oliver has been shown overwhelming support by his teachers, staff, classmates, scouts, neighbors, family and friends. He prepared and was so brave sharing with his class that he’ll be out for surgery, and asked them to stay home if they are sick, ‘cuz if he gets sick, he can’t have surgery.

We’ve also met with adjustment counselors, psychiatrists who specialize in helping kids with complex medical issues, tutors, and child life specialists to help prepare Oliver before, during, and post surgery.

On 1/16/2019, we were informed that our surgical date was moved up to 1/22, with pre-op on 1/18 to accommodate Dr. Bairds need to attend an event on 1/23. The earlier date was the only date that worked for him and the other surgical team members assigned to his case.

Newest Update

Journal entry by Sara Houser

Good news, Oliver returned to school this past week and is enjoying getting back into the groove of things. Next week, Oliver and I along with the rest of his 8th grade class will travel to Washington DC for a whirlwind tour. Personally, I'm looking forward to the warmer weather--come on spring!

On April 1, Oliver had a post-operative CT exam at Boston Children's Hosptial. We learned that his cardiac veins, atria, great arteries, and pericardium all look good, with no abnormalities detected. Additionally, his thyroid and esophagus look good, large airways are normal, and his sternotomy appears intact.  

Also discovered, is that his left lower lung lobe shows bibasilar atelectasis (lower part of the lung partially collapses) which is consistent with air-trapping/small airways disease--a common breathing problem after surgery. Additionally it appears that some of his lymph nodes (in the chest cavity around his lungs, near his aorta, and around his trachea) are enlarged and swollen--but this hasn't changed since his previous CT in January. We'll continue to keep an eye on them to ensure they don't increase in size. 

Until then, were doing our best to keep it "normal" around here. He'll continue to be on a host of activity restrictions and a 10lb weight limitation for awhile. Trying to figure out where he'll go to High School next year; continue with symphonic and jazz bands, and drum lessons; staying active in Boy Scouts; and taking an art class.  His next cardio appointment in a month on May 8th. 

Thank you all for your continued prayers and support!
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