We have been overwhelmed with the outpouring of your support and prayers for Zach, his care providers and our family. We truly feel blessed by God’s graces through your intercession.
We wanted to provide another update to our original message on Friday, March 27.
Zach had been dealing with symptoms of cold / sinus / asthma for the last several months. Last week, his symptoms accelerated and it resulted in Cary and Zach going to Riley Children’s Hospital and being admitted on Tuesday, March 24. Since then, Zach has been diagnosed with Wegener’s granulomatosis more recently named “Granulomatosis with polyangiitis” It is a rare auto immune disease. This disease has affected his lungs, kidneys, heart which has led to secondary yet high risk neuro issues which caused him to have a stroke. Because of the complexity of his symptoms and the rare nature of this disease, it took time for the Riley team to run the tests, treat the symptoms, and keep Zach safe so as to not cause any further damage to his lungs, kidneys and heart nor cause another stroke.
His Riley team is comprised of Rheumatology, Neurology, Hematology, Pulmonology, Nephrology, Cardiology and experts from Critical Care and Pharmacy.
As of Monday morning, the Riley team determined the treatment plans and started the necessary medications to get this disease of vasculitis under control. There are numerous risks involved in the treatment plans that are be closely monitored around the clock. There are still more treatments to receive, tests to undergo and results still pending which means he continues to remain at risk. He remains in the PICU at the hospital. His nurses say he is a “model patient” and his sense of humor has been returning the last couple of days with his treatment.
A very significant milestone was reached on Monday for which we prayed a lot about over the weekend. We didn’t know what impact the stroke had on his ability to walk. With help, Zach got up out of bed, moved to a chair, and then after about an hour sitting upright he returned to bed. During his time up and out of the bed, he completed physical therapy, occupational therapy, and speech/cognitive therapy all with positive outcomes. On Tuesday he continued his therapy and is demonstrating good progress with gaining strength and dexterity with his hand, arm and leg. He has in his room a standard basketball, basketball hoop over a door and a small basketball to use during the day to continue his therapy.
The journey will be long and we ask for your continued prayers that Zach responds well to the medications and has no additional complications or setbacks. Zach is in good spirits, laughing, eating whatever sounds good (today he asked for a donut) and listening to the instructions of the therapists, nurses and physicians. He has received so many e-Cards through Riley, phone calls, and text messages – you are making him smile, feel loved and supported. Keep communicating with him!
We are not sure of next steps for Zach with regard to coming home since he is still undergoing treatments and tests, not to mention his immune system is very compromised and even more vulnerable to infections. We will send another update in the coming days. In the meantime, please take care of yourselves, your families and your loved ones. Thank you for being such an amazing community of support and care! We truly are blessed because of you.
With much gratitude,
Cary and Jennifer