Drew has an appointment in September to see Dr. Wong in Massachusetts and had many appointments scheduled at our clinic here in Pennsylvania prior to then. These appointments were vital to allow us to provide Dr. Wong with the necessary records for her review. With Covid, all of Drew’s appointments were cancelled and they weren’t the type that could be done through telehealth. Thankfully, during a dip in the Covid cases, our clinic opened back up and we were able to safely receive the most important test which was the DEXA scan. During the past month, our family also made the decision to road trip across the country to Irvine, California, where Drew is receiving some additional therapeutic treatment. A plane ride would have been much faster and less expensive, but we were wary of flying with Drew from one Covid hot zone into another and back. The road trip was amazing, many memories were made, and most of all, Drew received his treatment. Just two days ago, we were able to speak with Drew’s doctor in California through Zoom to give him an update on Drew’s progress. Using a combination of flexibility in scheduling and methods of travel, and some use of technology, we have been able to get Drew what he needs during these times.
Every summer my family visits the UMass DMD clinic to see Dr. Wong and the team for Terry’s annual visit. The visit itself is one that is met with apprehension and general anxiety – will we see declines this year? – is always the question on everyone’s mind. This year’s visit was noticeably different from the previous 14 years as COVID-19 ravaged through the US. Everyone has been impacted by COVID but hospitals like UMass suffered, and continue to suffer, an especially heavy burden from this disease. Nonetheless, the DMD Clinic at UMass rises to the challenge. Patients (and 1 visitor) check-in before entering the Ambulatory care center and then proceed to the clinic. The waiting room is strictly limited (as of July 2020 only residents from the Northeast could visit in-person, others have had telemedicine visits scheduled) and patients/families are then escorted to the exam room. One of the notable differences is the degree to which the team has adopted significant PPE precautions – doctors, nurses and technicians are geared up with masks, gloves and in some cases, protective suits. The pulmonary team who conducts the pulmonary function tests are especially sensitive to the situation and are heavily donned in PPE. Constant cleaning of surfaces becomes almost like a “background noise”.
Beyond the visible changes, the team persists – greeting patients and families with the consistent kindness and care they are so well known for. Despite the pandemic, the DMD clinic carries on and has adapted as best as possible. It’s a noticeably different world at 55 Lake Avenue North but we were fortunate to be able to see Dr. Wong and her team. I can only imagine how tired the team must be after going through this pandemic. If you happen to connect with the clinic, or any healthcare provider, wish them well and do your part to protect against the spread.
My family had joint appointments when COVID first hit so we could all go in together since we have 2 boys w/DMD. Last week we were going in for our Spinal Fusion Pre-Op for only our youngest Emory age 13 & it was much different. I was stopped at the door as they checked my wife & Emory for a temperature check & Covid questioning. I was told I can’t go in with them. When my wide & son got to see the Orthopedic surgeon they realized Emory had lost weight & was down to 43lbs. Due to the severity of the surgery they weren’t comfortable going forward with the surgery. My wife called me, as I wait in the breezeway outside the hospital, to explain they want to put in a gastric feeding tube. Normally I would be in the room with my family so there would be no need to make calls to discuss the situation. After waiting 5-1/2 hours for them to talk to general surgeon to discuss G-tube surgery & my wife calling 3 times to keep me updated we finally got finished with the pre-op. Now we have to go through the G-tube surgery without me being with my wife & son as we are only able to switch out to have 1 parent in the room. We also have the scoliosis spinal fusion surgery in September where we will again have to be alone and or switch out being parents. My thought is if we live together and sleep in the same bed how can one parent have COVID w/o the other one getting it. Just let the parents be with your kid/kids during surgery. Doctor visits are different but surgery is a different story.
Thanks for sharing your story Terry! I am sure that was an incredibly upsetting experience. We had a similar experience at Seattle Children’s where Andria, 13 had a day surgery under general anesthesia for a urological condition. My husband was not allowed to come to the hospital (we were informed ahead of time only 1 parent). Apart from the stress and anxiety of anesthesia for our kiddos, I was concerned about his mobility after surgery. Andria uses a mobility scooter most of the time and power chair at school etc. so he does a sliding board transfers into the car. I was worried about him being able to do that, and can’t lift him on my own (nearly 100lbs.) At discharge, a young woman from the hospital staff came out to help me, which was very good of her and we did our best with some problem solving got him in the car but it’s not the same as Dad picking him up. We have also been to the dentist, that was very easy, they are in N95’s and shields and we were with a cloth mask and shield (except for the cleaning part). The scary part about COVID is we don’t really know how this will affect our boys. They are definitely immune-compromised, in addition to the other risk factors but I haven’t heard much about cases in DMD. We hope and pray every day we are making the best choices, being as careful and isolated as possible waiting for this to end!