Exton graced the world with his early arrival on February 28, 2017. His parents were overflowing with love for this tiny perfect person they had created. A few hours before they were to be discharged home, a nurse noticed a possible marker for a genetic abnormality and then a cardiac echo was done. Exton’s mom, Savannah, recalls dancing around the room with Exton in her arms as a doctor walked in the room with a discerning look on his face and asked her to sit down.
He asked if they had completed genetic testing in utero. Savannah and Alex, Exton’s dad, both replied with “no, we didn’t care either way”. The callous and emotionless physician looked Savannah dead in the eye and responded with “Shame on you”. He continued with his un-compassionate babble about how he was certain Exton had down syndrome and he was nervous about his heart. Exton was quickly seen by a pediatric cardiologist who also skipped class on “proper bedside manner” and “compassion” day. She relayed that Exton would need open heart surgery and that his defects were very serious, but had no time for questions.
Sometimes healthcare workers can become robotic. We witness the worst days of peoples lives on a regular basis. There has to be a certain level of desensitization for self preservation, however; without compassion, you’re not really healing, you’re “fixing”.
Savannah describes those doctors as thieves of joy. That’s exactly what they were. They stole her new mother happiness and replaced it with dread and panic. The coldness of the situation left her filled with self blame and guilt. She cried over her son, apologized to him, lived in fear that any moment with him could be the last. Then, she picked herself up and got a second opinion.
As the Black’s sat in the new pediatricians office waiting for the test results on their newborn son, they were terrified. They heard the turn of the doorknob and their hearts sank. Confusion followed by relief and a flood of joy washed over Savannah and Alex when the physician bounced into the room gleefully declaring “Congratulations” his test was positive for Trisomy 21! This new multi-carat gem of a doctor gave them their joy back and told them how beautiful Exton’s life, and their’s will be with Down Syndrome. She answered all of their questions and loaded them up with information about his diagnosis. This doctor and her staff have been the Black’s guardian angels ever since.
When I met the Black family for the first time, they were finishing up their training to bring Exton home with a trach and on a ventilator. Savannah was a bundle of nerves, and Alex stayed stoic and supportive. I knew instantly what good hands this beautiful red-haired boy was in. Exton smiled at me from between the bars on the crib, and I actually felt myself melt into putty. He still owns me.
Exton has more personality and sass than one should be able to fit in such a tiny body. Maybe it’s a ginger thing, but this boy is EXTRA. He has an unwavering affinity for Rod Stewart, Llama Llama, and giraffes named Gertie! He’s also been the cover model for several of my favorite holiday photo-shoots.
I asked Savannah what the scariest part of going home was, and she replied with “knowing that we were now his first line of defense”. It’s a scary thing knowing once you leave the comfort of the hospital full of nurses and respiratory therapists, that it’s just you, and whatever knowledge your brain locked up tight for safe keeping.
They went home with Exton in August of 2017 and have been nailing this whole home care thing ever since. Some of their favorite tips and tricks of home care are…
- using coban tape for the oximeter probes. You can purchase a large pack of it from tractor supply.
- using green Listerine in suction canisters
- Pre-making trach care bags monthly
- Invest in a great planner. Organized chaos.
Savannah said that their greatest accomplishment on the journey so far is surviving the transition home. Not only that, but they are thriving and feel like this life they have been given is a blessing. She continued on to say, “it’s everything we never knew we needed or wanted”. They love being a vent family and being a part of the vent family tribe. They have found their own unique rhythm to match their own unique Exton.
I always love asking our vent families what their proudest moment is, because you always hear so much joy and accomplishment in the answer, so of course I asked Savannah. Her answer, an emergency trach change on the side of the interstate in the back of the van.
“After that moment, I think we saw all of our training come full circle. It gave us the confidence that we can do it, we can handle it. It’s a very gratifying feeling knowing that you can do all the things your nurses and RT’s told you that you could at the beginning of the journey when you had so much self doubt.” – Savannah
I think Savannah sums things up pretty well, so I’ll just leave it in her words. “We think Exton is our very own miracle and there are no limits to what we would do for him. We think most parents feel that way about their children, we are just living in a different circumstance than most. And most days, those limits are put to the test! Whether it be by a strict regiment of medical care, therapies, or the constant cycle of those annoying CoCo Melon YouTube videos he loves. We want people to know that this is a lifestyle we don’t regret. This is a lifestyle we embrace and we try so hard to show the world that this is what unconditional love looks like! We want people to know Exton is so much more than medical equipment and a diagnosis, even though those things are very important parts of him.”
Exton is currently weaned off of the ventilator during the day. He is making amazing strides to wean off of his equipment. He is walking, dancing, and shamelessly flirting 24/7. I could not be prouder of the top shelf level of caregivers Savannah and Alex have become, and how much joy they bring with them everywhere they go.
This is the first of many patient spotlight posts. You can keep up with Exton’s shenanigans @ https://www.facebook.com/extraexton/