The road has not been easy, but we are making strides toward what will be our new normal.

From September 17-September 30 Wesley was inpatient at Children’s Hospital of Philadelphia (CHOP) for a second pericardial effusion. During this time Wes was on systemic steroids and several (four) medications to bring his blood pressure down. 

Since leaving the hospital Wesley has struggled with energy and stamina partly because of all the weight he put on while on steroids. After two echocardiograms indicating that the small effusion leftover from the drain was. Not growing and three showing that it was fully resolved, Wesley was taken off steroids this Tuesday. He had his central line removed on Monday and is now able to take baths without being wrapped in plastic wrap!

Our next steps are continued weekly appointments at CHOP, our 6-month follow up appointments with Minnesota that will include another sleep study to determine is he still has sleep apnea, and other tests and scans and meetings with specialists.

This Tuesday Wes sees nephrology (who will hopefully be able to reduce the BP meds), neurosurgery to discuss the results of his spinal tap and CT/MRI, and pulmonology to determine if we can complete the sleep study at CHOP instead of doing it in Minnesota. 

I know I haven’t been good about updating this site, and I will try my best to be better. We have been overwhelmed with Asher’s return to school, my return to work, and Wesley’s ongoing care needs. 

Thank you to everyone who has reached out or sent prayers or positive thoughts and vibes. We appreciate all of your support.