Tiny But Mighty Medical Update





Love bears all things, believes all things, hopes all things, endures all things. Love never ends.

1 Corinthians 13

 

This journey with Evelyn has been a marathon of endurance. It has challenged how far our faith will go, and how much our hope will endure.   We love our girl with all that we are though, and will do whatever it takes to make her well. 

 

Since before her adoption, we knew that Evie would need to be seen by out of state specialists.  In April, we planned a trip to Cincinnati Children's Hospital, but Evie had other plans.  Though we rescheduled for July, we eventually decided that we wanted her to be seen by the top pediatric colorectal surgeon in the world, Dr. Levitt, who had moved to Nationwide Hospital in Columbus, OH. 

 

So, we packed our bags, dropped the kids with their grandparents and checked in at the Ronald McDonald House for a week of outpatient testing and consultation.  When our first two tests ended by 10AM on a Friday, we made a last minute decision to drive four hours back to KY to be with family for the weekend. 

 

Unfortunately, by late night Saturday, Evie woke with vomiting and a 104 degree fever, so we were off to the ER.  The small town ER got her fever down and did a culture to determine that she indeed had the kidney infection that we suspected.  They treated her fever and nausea and planned to send her by ambulance to Louisville.  Meanwhile, knowing that she was to have a procedure under anesthesia that Monday morning, we emailed Dr. Levitt just as a heads up.  Though he was travelling out of state, and not a urologist, he emailed us ALL NIGHT, urging us to get her back to Columbus. 

 

Early Sunday morning, we convinced the local ER doctor to let us sign a waiver going against his suggestion to get her to the nearest children's hospital.  After he named every hospital in between Bardstown, KY and Columbus, we headed out in the pouring rain for our four drive back to Nationwide. 

 

With adrenaline pumping and prayers flying, we cruised quickly up the highway until we hit gridlock traffic outside Cincinnati.  Undeterred, and highly trained in defensive driving, Evie's mission minded daddy inched in front of three lanes of traffic, drove the wrong way up the median on I75 and proceeded up an exit ramp, successfully keeping us moving north toward the medical mecca for kids with Evie's needs.

Thanks to Dr. Levitt, she had a direct admission and was being treated by mid-morning. 

(Guess I bragged too early about no overnight hospital stays in June and July!)  We were immediately impressed by her medical team, as all of her testing was rearranged with an effort to not extend our stay, though focusing on the kidney infection. 

 

That first day and night she continued to be sick with spiking temperatures.  On Sunday night, a team rushed in in the middle of the night for an x-ray and blood culture, but thankfully the infection had not spread.   

Weary from two scary nights, we spent the next few days snoozing and letting meds work.    Soon though, it was time for all the yucky tests, each a physical and emotional challenge for all of us. A couple times a day, transport came to stroll Evie through the hallways for her renal ultrasound, X-rays, VCUG, cystoscopy, barium enema, and urodynamics study. 

 

Our girl is so very brave and so incredibly strong.  Though she would sob and rub her feet together in pain, she never resisted.  Mark and I just held her hands, whispered in her ear and prayed.  Thankful for incredibly gentle doctors and nurses, we watched computer screens, trying to understand why red lines that weren't flat would mean more surgery and more treatment.   

As yucky as each test was, she rolled out from under anesthesia looking like a resting angel, her smile soon returning. 

Don't ya know that hospital stays aren't all bad? 

 The silver lining is that they always result in lots of comfort "bip" consumption. 

(Thanks to Jill for the giant bag of happiness!) 

  And sometimes some sneaky "bip" stealing.   

 

We did have some fun making hallway rounds searching for people to say hi to, playing in the playroom and enjoying  all the toys that kept arriving at the hospital and Ronald McDonald House. 

Well worth each of the 600 miles from home, Nationwide Children's Hospital is an amazing, comprehensive clinic for kids with issues like our girl's.   Urology, nephrology, colorectal, neurology, and other fields are not discussed in isolation.  Every specialist that we saw discussed ALL of Evie, past, present and future.   Because she was admitted, we were blessed with lots of time with the surgeons.  They sat on our couch discussing options and drawing explanatory diagrams.  When Dr. Levitt would ask for a test time to be altered, someone from his team would scramble to make it happen. 

 

On our last day, we had an early morning test scheduled, then open time before our whole team clinic appointment.  When we arrived that AM, we passed Dr. Levitt in the coffee shop and he asked where we were headed.  Later, while in the middle of our testing, we got a message saying that we could come over when finished for our clinic visit.    Four surgeons with full waiting rooms changed their schedule so we wouldn't have time between appointments.   

 

 The hospital is new and well designed to comfort and care for families.  Even the food was good!  So impressed!

 

As hard as this week was, over and over again, we got little blessings and signs that God had gone before us once again doing immeasurably more than we could have asked for.   Though Evie was unexpectedly sick and we heard hard things, we still left feeling carried and blessed. And Evelyn?  She just smiled and took it all in, scoping out opportunities to play. 

 So what's next for our tiny but mighty?

 

We are caring for Evelyn a bit more carefully each day, and have added new meds for her bladder.  She was also given two new antibiotics to address some dangerous and highly resistant bacteria that have colonized within her little body.  If her fever goes up to 100.5, we'll be heading to the doctor.  The hope is that infections will be eliminated, so we can put major urology surgery off a few more years.  Though she's mighty, she's still tiny.   

 

She is scheduled for major colorectal surgery back at Nationwide in early November.  They'll be moving things around, improving muscles and removing a fistula.  If kidney infections continue, she'll also have bladder surgery at that same time. 

  

 Prayer requests: 

~That antibiotics will effectively treat bacteria and prevent infection. 

~Discernment as we discuss combining urology and colorectal surgeries.

~That the medications that she's on will be effective, but eliminated if not absolutely necessary. 

~For hope, gratitude and faith to endure as we navigate this medical marathon. 

~For Evie's strength and little heart. 

~That we as a family will have lots of joy and fun on the in-between days, and that we'll lean in to what the Lord is teaching.

Thank you so very much, Team Evie.  We are in awe of the number of people who STILL continue to pray specifically for our girl.  Your enduring dedication and support are the hands and feet of the Lord's abundant love and provision.  We love each of you tremendously. 

Big fat gratitude to Dr. Levitt, Dr. Wood, Dr. McCleod, and a host of AMAZING nurses.

Thanks also to my parents for caring for our kids so we could both be present in Columbus.  Grateful.