Once in while, patients using Mighty Well products reach out to tell us their stories. This one was too beautiful to not share!
Teddy is three years old. He is a busy and active little guy. Teddy has Dup15q syndrome. For a basic genetics lesson, he has three extra copies of a critical region from the 15th chromosome, giving him four copies total. This region is critical in neurological development, so this has exposed us to a world of disability and parenting without a roadmap. Teddy, because of his Dup15q, has terrible drug-resistant epilepsy alongside global developmental delays. These delays affect his gross motor, fine motor, and speech skills. We do a lot of therapy to help give him the best shot. He’s a busy guy, getting into everything in our home, chasing his dog Si, and testing out his dangerous moves. He has zero fear and always gets himself into tight predicaments!
Last year, we listened to a presentation from The Brain Recovery Project about seeking neurosurgical intervention for children with drug-resistant epilepsy. The more we listened, the more we kept thinking that’s exactly what Teddy needed. Then the process to find a team began. We traveled to Denver, CO, and Kansas City, MO for neurosurgical opinions, alongside our team in St. Paul, MN. Teddy’s case was hard; he has generalized epilepsy, meaning it affects his entire brain. We did testing to look for structural abnormalities that could be the cause, but all testing was negative. The center we initially found offered very conservative options that didn’t give us a great chance to significantly reduce Teddy’s seizure burden. Then we found the team at UCLA, which changed our path forever. Teddy became the youngest patient in the country with thalamic RNS placement in July of 2021. It was the start of our answered prayers.
post-procedure
After surgery, we had a few hiccups with his incision, first a stitch abscess then an area of hypergranulation tissue. We connected with our local neurosurgeon who offered to revise his incision to get back on track. That trip to the OR set the tone for the last nearly 6 weeks. Teddy’s hardware was compromised by infection. Our hearts were very heavy and we had to work through a cycle of grief. Anger and sadness rotated from the time we got the call from the OR. Disbelief that we felt the chances of seizure freedom slipping away. The next step to going home from the hospital involved placing a PICC line and 4-6 weeks of IV antibiotics at home. Working in the hospital environment already all I could focus on was the immense fear of further infections and the uphill battle our family was embarking on.
For the past nearly 6 weeks we have been on this intense daily journey more appointments, more worry, and a lot more friends to help us. We got to know the home health nursing team well. My coworkers covered my absence and traded shifts to ensure I was home to help with our Monday home health appointment. Usually, this home visit involves lab collection, dressing and cap change. And Teddy doesn’t really appreciate much besides the chance to snag their stethoscope.
day to day
Our daily life has changed immensely. He’s become very easy to snuggle each morning before I head to work, waking him up to heparin lock the line and then again in the evening to hook up his antibiotic and get him settled for the night. It’s hard because these snuggles involve hand sanitizer, gloves, and alcohol swabs whilst wrestling him into the perfect position that I can reach the supply tray as well.
I’ve been able to witness my husband and Teddy’s dad transform into a stronger medical advocate and have a willingness to learn a whole new set of tasks that involve everything with a PICC line. I have exposure – being in the medical field – so I can perform the daily tasks with ease, while he was learning everything he needed to do to keep Teddy safe.
We have transitioned this normally toasty kid into wearing long sleeve shirts with his cover to keep his line out of sight and mind because toddlers are just that…toddlers. This process has enabled us to problem-solve with our local Children’s Hospital to brainstorm how to make processes and programs better for families that need them.
This experience has made us thankful for just a stable day or week.
our “normal”
Many have continued to watch our family work through this PICC line period, commenting that we make it look easy or it doesn’t seem to phase us. Deep down, it’s changed how we function daily and added many stressors.
At this point, I feel like Teddy is used to being in a medical setting. Despite his nonverbal status, he’s usually very happy. He takes many things that happen in stride, even when it involves pokes and blood draws. Part of that makes my mama heart ache, knowing that he has to work and give so much for basic needs and services yet so grateful for making situations less stressful. Having your child be medically fragile is exhausting on its own, adding in complications, there’s no greater fear.
The journey for parenthood hasn’t been easy for us, but it’s been more than worth it. We learned early to be an advocate for Teddy. I was able to witness families do the same thing in the NICU so it felt natural in a way. We have always been his caregivers so that is no change to our current family needs. For myself it’s been hard to watch him work through these processes; it’s hard to know if he understands what is happening and also exhausting to worry about it. I would say the hardest part of this PICC line experience is trying to sink away the worry of infection all day every day.
The PICCPerfect PICC line cover has greatly improved the ability to keep his line secure and tucked away. This has been a relief to ensure his line and dressing stay intact because like I said before… toddlers. We have appreciated how breathable the fabric is and how nicely the sizing system has worked for his arm. We love the easy washing instructions alongside the quality of the product; it’s been through a lot each day.
My biggest hope for any family experiencing medical hardship would be knowing that you will be okay. It will be hard and probably not so much fun, but you will be okay regardless of the outcome. My tip would be to become as empowered as you can and get all the resources you need to do the job!
Stories like these help us all feel less alone – thank you Teddy and family for sharing! Do you have a story you would like to share with our community? Write to us at listenup@mightywell.com.