COVID-19 has impacted everyone in ways we could never imagine. As we all learn to navigate this new world of masks, social distancing and virtual family gatherings, we asked some of our Myhre families how the pandemic has touched them. Here’s what Myhre mom, Margo, had to say about life in the COVID era with daughter, Edith.
Edith and Tater enjoy the outside.
On Friday, March 20, my daughter was recovering in the American Family Children’s Hospital in Madison, WI from a combined procedure. Her airway stenosis, stenosis being a hallmark of Myhre syndrome, works to knit itself together and needs to be “ballooned” or opened several times a year for her to breathe. Her tethered cord had been causing complications, so her medical team okayed a combined procedure: first opening her airway and then releasing her tethered cord.
With immense gratitude and relief, we learned that her procedures were successful and anticipated that after a night in the hospital, we would return home to IL on Saturday. Then, in the hospital room, we hear news the IL governor issued a “stay-at-home” order for the entire state until April 7. Will IL let us return tonight, I wondered? Then I look around. What is happening? I realize there are virtually no other families on this floor and I see outside my daughter’s door, nursing staff practicing putting clear shields with thick foam bands over their already masked faces.
Because respiratory complications associated with COVID could require intubation, which in Myhre kiddos could cause additional scaring and result in her needing a tracheostomy, we consider our daughter to be a high-risk person. We’ve taken COVID exposure precautions pretty seriously at our house.
Since that day in March, so many things have changed:
Online learning for my special-needs child;
Restricted contact with anyone outside our family- for both her and us. Her older sister had to serve a two-week basement quarantine after visiting a friend in Chicago.
Prior to her surgery, utter fear when she would ask us to take her temperature or report that her throat hurt. Could it possibly be COVID or is it her stenosis or something else?
Video-based medical appointments with the numerous physicians and counselors she regularly sees. Because it’s already tough for her to pick up on people’s body language and nonverbal cues, the video sessions can be frustrating for her and us.
COVID testing prior to her subsequent June 23 balloon dilation procedure in Madison.
Declining the rare social invitation to go to a classmate’s house because it fell too close to her June procedure. She couldn’t risk any unnecessary exposure.
Helping out at home. Time to get organized, mom!
On the lighter and brighter side, we have seen an increase in her willingness to help around the house. She offers to hand wash dishes and walks our dog twice, sometimes even three times every day. Her spirit is strong. She continues to stoically endure many uncomfortable and painful medical “inquiries” into her Myhre symptoms; nose scope, and bladder testing just to name two.
Siblings home early from college could typically take our daughter fun places like shopping or for the coveted ice cream cone. We have to be creative now. For me, I’ve developed a deeper appreciation of our morning breakfasts, afternoon walks, and special time reading together.