Chocolate and Nightmare Visit Boston

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.
Alex, Danielle, and Ally selfie

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.
Alex- present

“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.
Alex in hospital1

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

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.

The Real Patient Portals

For privacy purposes of those discussed here, some of the details of this blog post have been altered/omitted. The heart of the story remains the same.

 

To avoid the throbbing headache that is commuting from Providence to Boston during morning traffic, I stayed over in Massachusetts prior to my Joslin appointments this week.

I hoped to catch the end of the Providence-Villanova game at the hotel bar, but the thrashing PC was receiving was so embarrassing that the bartender instead flipped between The Voice and the Bruins. I asked a patron if the seat next to her at the crowded bar was available, and she nodded. The restaurant was busy and it seemed like it would be a while before my dinner was delivered, so I took a big gulp of my classy Bud Light and vowed to make friends while I waited.

“Are you here for business?” I asked the professionally-dressed woman.

“Actually, my child is being treated at Children’s Hospital.”

“I’m sorry to hear that. But your child is in phenomenal hands.”

“Yes, we have been here for a long time, but soon we will travel home with a stronger, healthier child. We have been very blessed.”

And so we talked for almost an hour. We discussed her home many miles away from here, admired the nurses who followed their professional callings to ease the suffering of their patients, educated one another on our respective areas of patient or caregiver knowledge, and, to be quite honest, took solace in finding a bar buddy who understood the stress and anxiety of Boston medical appointments. Sure, I seek out care in Boston because it is the best, and this lady does, too. But that doesn’t make it any less gut-wrenching every time the appointment days arrive.

We eventually wished each other well and parted ways. I want to give SuperMom an anonymous shout out here, though, because of the example of strength that she provided that evening. I have so much respect for the parents of any child who faces illness- whether that be type one diabetes or something else. Being the patient for most of my life, I have mainly been preoccupied with my own suffering- something I know that I can and will handle.

Watching others suffer, though, makes me nauseous, anxious, and somewhat frozen in “What do I do?!!” mode. SuperMoms and SuperDads don’t have the option of “What do I do?!!” mode. They activate “Do” mode because their child is hurting and they want the pain to stop. They remain calm when the world is shaken up around them. Yes, they have days of sadness and tears, but they try their best to provide their children with the greatest lives possible, to comfort them on the rough days, and to keep on going.

So, to SuperMom at the bar, cheers to health and happiness for you and your family.

The next morning, I hastily checked out of the hotel and made my way to Joslin Diabetes Center, where I had one thing on my mind: very light, no sugar coffee, and even better if you can hook me up to an IV drip of it.

I generally enjoy my Joslin experience because it is one of the only places on earth where I feel completely safe from a diabetes standpoint. If I go low or high, there are plenty of people who know how to help. But this time, I was nervous and emotional, as it was my last appointment with Current Endo before her departure; additionally, these days are quite frankly long and exhausting no matter what the outcome is.

I fumbled my way to the coffee stand through a haze of anxiety.

“What’s ah matter, my darling?” the coffee stand employee cooed, her brow furrowed.

“Oh, nothing. I just need some coffee to wake up,” I said, shrugging it off.

“I asked how your morning was and you didn’t reply,” she sounded off, much to my surprise and admiration. (I like a person who tells it like it is!)

“My apologies. I must not have heard you.” My level of distractedness due to nerves was obvious now.

Without skipping a beat, she looked me straight in the eye and stated, “You will be okay. You are so strong.”

This kind woman had never met me before. She had no prior knowledge as to whether I was in the hospital district of Boston as a patient, a caregiver, a sales rep, an employee, or so on. But she knew, without hesitation, that I was hurting simply from the look in my eyes. She seemed to recognize that I was the patient, and that I was trying to keep it all together. Her confidence that I could do this was the gentle nudge I needed to go check in at Joslin, ready to take on the day and whatever it would bring.

Blinking back tears, I thanked her for her reassurance and sauntered off with coffee warming my hands and coffee shop lady’s words warming my soul.

After my appointments, I needed more coffee before racing back to work. I stopped at the same coffee kiosk, and the same employee was still there. I filled my cup and went to pay.

“You were right. Everything was okay. I wanted to thank you for what you said earlier. You made me feel better.”

“God will take care of everything,” she replied.

“Yes. And there should be more people in the world like you. Your joy is contagious.”

And we both fought back tears, nodded our heads in agreement, and vowed to pray for one another.

Bars and coffee shops are the real patient portals. These are the watering holes for the warriors- the patients and the caregivers- to assemble and collect their emotions. Here, the pep talks happen. The fears and aspirations are relayed. The hugs are handed out a little more freely. The tears are dried if necessary. God is there, as these women proved to me this week.

Lucky for me, I’m always thirsty. Something tells me I’ll be back soon.

To SuperMom and SuperCoffeeShopEmployee, this blog post goes out to you. You are both inspirations. Thank you…