I recently had the honor of accompanying my Stanford Medicine X (#MedX) bestie, Danielle Edges, and her young daughter, Alex, on their visit to Children’s Hospital Boston for a heart catheter procedure. Alex has a congenital heart disease called heterotaxy, additionally complicated by liver and spine issues. Danielle’s honest perspective on her family’s life with CHD can be found on her blog, Life is hard. Wear a Helmet. Adventures in Life. With Danielle’s permission, I am sharing my take on her family’s bravery here.

 

I joined the Edges at their hotel room because Alex’s heart cath had been postponed a few hours. Danielle and Alex had endured many tiring hours of travel across the country two days earlier. The good news about the delay in the procedure was that I got to hang out with them for a few hours away from the beeping of hospital machines and the drowsiness of anesthesia. The bad news was that Alex could not eat before the heart cath, so adding an extra few hours to that timeline was understandably not ideal.

MedX and MedX’er-in-training selfie.

 

Alex’s lively spirit was contagious despite being hungry, however. Danielle and I are both known to say what we mean as healthcare advocates, which is probably why we click so well. I saw Danielle’s energy and wit in Alex, who is well-versed in medical lingo after many hospital stays in the past. (We totally have a future MedX’er-in-training!)

We tried to distract from the hunger pangs by coloring birds in a coloring book, or playing with Alex’s new stuffed puppy toy that the Fairy MedX Godmother, Ally, brought along for the hospital stay.

“I love my present.” -Alex.  (Complete with Chocolate, the puppy, picture).

 

“What is that? I want one!” Alex proclaimed, pointing to my Dexcom receiver.

We discussed how we were similar in some ways, as Alex has a medical device connected to her as well- a G-tube to help her get the proper amount of nutrients each day. Her blood sugar can also dip low due to her liver condition, and who doesn’t like a communal grumble about hypoglycemia?!

Soon it was time to head over to the hospital. The air was frigidly cold on our short walk there. This was my first time stepping foot in Children’s despite decades of treatment nearby at the Joslin Diabetes Center and having family and friends who have received lifesaving care at BCH. Simply walking through the main entryway is a moving experience; there are families from all over the world, children with conditions both very visible and very invisible, all there to seek topnotch medical care at the best children’s hospital.

We were taken to a hospital bed for the preparations prior to the heart cath. A kind nurse gently informed Alex that she would need IV fluids. The nurse spoke directly with Alex, not at her. Alex was treated like the informed member of the healthcare team that she is, even at only eight years old.

Another nurse came in and the IV insertion was done before we even blinked. Kids tell it like it is, especially complex-medical kids whose perspectives are better than most. So, Alex looked right at the nurse and said “Ow,” and then immediately went back to watching TV stoically while Danielle and I chatted.

The nurses were so impressed with her courage that they rewarded Alex with a dark brown and black beanie baby puppy to complement Chocolate, the larger brown and white puppy.

“What is the new puppy’s name?” the nurse asked.

Alex had just been poked with a large needle. She was ravenous and about to undergo a difficult medical procedure.

“Nightmare,” she aptly replied.

From the mouths of babes, as they say. I will never forget the humor and irony in that moment for as long as I live.

Rocking out with Chocolate and Nightmare.

 

Shortly thereafter, a nurse anesthetist administered medication to prep Alex for the heart cath, and it was time for her to be wheeled into the surgical room. As Alex dozed off, Danielle whispered that she loved her, and Alex whispered back, “I love you, too.”

In these moments, Danielle had to be strong not only for herself, but for her medically-complex child, as well as her daughter and husband back home. She is truly SuperMom, as evidenced by the poise she and Alex exhibited throughout the long day at the heart center.

I, on the other hand, do not always handle hospitals so well. We had not eaten much over the course of the busy day, and suddenly everything hit me all at once. The doctors came to the waiting room to speak to Danielle while Alex was in recovery. Danielle can explain the details far better than I can; please see her blog post here. In layman’s terms, there was good news peppered with difficult news.

We then proceeded back to Alex’s room. A nurse was with us as Alex slowly roused from the heavy sedation. This same nurse called Danielle with updates every hour while Alex’s heart cath went on, proving once again why Children’s Hospital gets every detail right. As I watched this little girl arising from such a long fight, my head suddenly started to spin. The room was hot, and my Dexcom indicated a fairly fast blood sugar drop.

I alerted Danielle and the nurse, who brought me some water and this adorable tiny carton of orange juice just in case I needed it.

OJ for the diabetes win.

 

Half of a granola bar consumed later, and I had recovered just as quickly as the dizzy spell had appeared.

“Diabetes is so… constant,” Danielle remarked afterwards.

“Yes, but so is all of this,” I replied, glancing around at the machines in Alex’s room.

Our respective diseases can act up in the exact moments when we wish they would behave; but the understanding and support that we have gained through our friendships at MedX and through ePatient communities have made those moments less scary. That much was articulated by those two sentences exchanged between myself and Danielle, an unspoken understanding and respect bridging the gap between health conditions.

As the evening progressed and Alex was moved to a new room for overnight observation, it was time for me to head back to Rhode Island. Danielle’s night was just beginning, though. There would be more IVs, chest xrays, and medications to be delivered, and this Mom would be by her daughter’s side through it all. We hugged and parted ways, knowing that we would see each other soon.

 

*****

To simply state that the Edges family is inspiring does not do justice to their story. I can best describe their strength by detailing a tiny moment in the grand scheme of the heart catheter day.

While we waited for Alex to be called in for the procedure, Danielle and I conversed in our signature animated dialogue, talking about hopes and dreams for healthcare, how much we missed our MedX friends and could not wait to be reunited, and more. Alex was quiet and focused on the cartoons playing in her room. She had an IV in her hand and was about to receive sedation medication before having an investigatory procedure performed- and, later, some intervention procedures- in the hopes of improving her quality of life. This was big stuff for a little kid.

I heard soft noises in the background as Danielle and I spoke, and I at first thought that Alex was crying or whimpering in nervousness before being taken away from Mommy. But then I listened more closely.

Alex was not crying. She was humming.

This child was about to have dye injected into her heart, to have coils installed to curtail pulmonary AVMs, to lie on a stiff operating table that would anger her scoliosis, to be in pain.

Yet despite it all, she was still happy.

She was humming.

 

 

To help get the #EdgesToBoston this summer, please see here.