Wilder’s Ride (8/25/26)

We were able to be discharged from the hospital Friday afternoon. This hospital visit earned us a pulse ox machine to intermittently measure his oxygen saturations. During our stay his saturations were traveling lower than the cardiologists preferred. They explored reasons why with a CT to look at his lungs, an echo, ENT came and evaluated his airways through examination and scoping, but no concrete reason was found. 

Now that we are home, his numbers have been fabulous on almost all of the spot checks  and almost entirely in the range the doctors would have preferred while we were at the hospital. 

There were some minor changes to his echo and that has earned us some more frequent follow-ups. When a babies heart is repaired they like to keep a close eye on it because as they grow, their heart grows. This growth can cause changes to occur within the heart. Our hope is our next echo will reassure that his heart is doing well and staying stable. 

This hospital stay was a lot to manage for both Wilder and I. He had a lot of new doctors who were not familiar with his complexities and it honestly felt like many of them were not even taking time to read his chart. In addition he is followed by multiple departments in the hospital and it felt like they were not all communicating and in agreement on a care plan for him. He is also older and more of aware of his surroundings. He was not a fan of the many disruptions to his sleep and so many doctors examining him.  

This update is quite delayed due to my return to work this week. My plan is to work the next 3 weeks and then take the rest of my maternity leave before returning to work full time in November. 

Prayers for Wilder’s health and heart to continue to be stable. Prayers for Jesse and I as we continue to navigate the world of parenting a child with medical complexities. And prayers for family as we work through the change of me being at work the next couple weeks.