Willow had her 6 month cardiology appointment, with an EKG and Echocardiogram today. She was super brave and delighted in taking her own EKG stickers off again. 

 

Willow has had a rough few months with illnesses. She has had been sick nearly continuously since she started back at school in August. Then, she started having severe asthma issues which resulted in 12 straight weeks of using Flovent and a rescue Albuterol inhaler daily. Children's Mercy Urgent Care was able to get her into their Pulmonary Clinic in December.

 

The Pulmonologist, her Pediatrician, and her Cardiologist all worked together to come up with the best plan for her. It has been tricky to determine whether her low oxygen is pulmonary, cardiac, or a mixture of both. The Cardiologist ordered a Holter Monitor which she wore for a week and the results were normal. Since seeing the Pulmonologist, she has started a combination inhaler twice a day (Symbicort) and we still use her Albuterol for emergencies (when her O2 dips below 90).

 

At her Cardiology appointment today, the testing still showed Willow’s heart corrections and blood flow are consistent with her last scans. Willow continues to get winded a bit quicker than typical kids and has gotten good about sitting out when she gets tired.

 

The doctor is slightly concerned about Willow's Atrial Septal Defect, which causes bidirectional flow between chambers (and blue blood). This may cause some of her low oxygen issues. He would like to wait until after winter, when viruses are less common, and do a heart catheterization to get a fuller picture of how her heart is working. Willow may eventually need to have the ASD surgically closed. However, this procedure could also cause more issues with her GLENN correction, so we would need to consider the benefits.

 

As of now, Willow will continue going to preschool to play and learn every weekday. Her current favorite activities are pretend play, Just Dance, and making art. Just a “normal” almost 5 year old 🖤