TEAM SADIE GREY Update
I believe that we as human beings are gifted with the instinct and ability to look ahead. We plan for expected events (college, retirement, etc.) and unexpected events (disability, accidents, etc.), and we even plan for the inevitable (dying). We divide our time here on earth into hours, days, months, and years and then attempt to prioritize between family, work, social, and charitable activities. I have been blessed that my purpose in this life has been to help my clients in the development of plans and strategies to address these priorities.
And I do my own planning. On December 18th 2014, Karen and I returned from our annual business conference with a renewed enthusiasm for the financial service process. With the introduction of new products and new software, I was prepared to develop our 2015 business plan over the holidays – a business plan that would focus on strengthening our clients' strategies by deploying a number of these newly available products and tools. I had even remembered to order my 2015 calendars early, and they were already here.
And then on the 19th we got the phone call.
Our daughter Abby had taken our new 3½ month old granddaughter Sadie to the Pediatrician because she was fussy and didn't seem to feel well. She and our son-in-law Scott (and our 2 year old grandson Aiden) lived in Okinawa as he was a Recon Marine stationed with 3rd Recon there. A battery of tests was conducted, and Sadie was hospitalized the next day with liver failure. The diagnosis was devastating. She was suffering from a rare liver disorder known as Biliary Atresia. Because the disease was so far advanced before diagnosis, she would require a liver transplant.
She and her family were airlifted from the Naval Hospital at Camp Foster, Okinawa (where she was born) to the San Diego Naval Hospital on the 22nd.
Karen and I flew to San Diego on the 23rd.
Over the next two weeks, more tests were completed including a liver biopsy and the diagnosis was confirmed. On January 2nd Sadie was moved from San Diego to UCLA Children's Hospital where it was expected she would remain until the transplant was completed. The decision for Aiden to return to North Carolina with us while Abby and Scott focused on Sadie's treatment was made, and on January 4th Karen and I left California with him. Over the next 4 days we drove home - 2520 miles cross country.
Through a miraculous turn of events, Sadie was moved to Duke University Hospital two weeks after arriving at UCLA. Having her only 97 miles away made the situation a bit more bearable, and we were able to support Abby and Scott in greater ways. We visited at least once a week, often staying overnight, Aiden getting to see Mommy and Daddy while Grandma and Papa visited with baby sister. Still, the fact remained Sadie was a very sick little girl awaiting a liver transplant.
In February, Scott was officially transferred to Camp LeJeune (after just having been transferred to Camp Pendleton to be close to UCLA), and since they still owned a home in Sneads Ferry, once Sadie was squared away at least they would be close to home again.
Because all their belongings except for a couple of suitcases of clothes were still in Okinawa, the entire family lived with us for the first half of 2015 as Sadie would be hospitalized for a day or two, then at our house for a few days, before going back to Duke yet again – all of this as we waited on a liver donation. Her condition continued to deteriorate until she was finally readmitted the first week of March with the expectation that she would not leave the hospital until post-transplant.
At this point, Duke began searching for a living donor which is an extraordinary step for them. Karen (Grandma) was the first to be tested, and after two days of MRIs, CT Scans, and multiple blood draws, it was determined that Karen’s liver was healthy but her vascular construction would not align with Sadie’s and therefore she was not a match. Immediately thereafter, Scott was tested and on Sunday, March 8th, he was deemed a match.
The transplant took place the next morning.
The post-transplant hospital stay had been projected to be 30 days minimum. Sadie came ‘home’ (to our house) just 9 days post-op. She had some ‘ups and downs’ over the next several months which included two additional hospitalizations. But by the late summer 2015, she was well enough that the family moved to their home in Sneads Ferry…and I got back to work.
2016 started off fine with Sadie progressing well. But in May, she got sick again and was hospitalized at Duke with an unknown blood infection. Over the next 11 weeks, she would have a pacemaker implanted and have 24 inches of her intestines removed – twice we were told that ‘if she makes it through the night, we’ll try this tomorrow.’ In many ways, this situation was more difficult that waiting for the transplant. At least the transplant protocol was well defined. This hospitalization and the battle against an undiagnosed infection was ‘day by day’ crisis management.
But on August 23rd, 5 days before her second birthday, she was discharged from the hospital. And with the only exception being a hernia repair in May 2017 and her tonsils out, she has not been inpatient since. She has gone from weekly, to monthly, to quarterly, and now semi-annually in her Duke followups – the most recent in September 2019 where her transplant doctor deemed her lab results as ‘perfect’.
I tell people that if they ever speak to someone who doesn’t believe in the power of prayer, please give them my phone number – but I get two minutes for rebuttal.
This will sound ironic coming from me, but I have now learned that while many things can be planned for, some cannot. Yet I have also witnessed the power of prayer in action, and the out-pouring of love and compassion from family and friends and, in many instances, total strangers. I also now know the experience of spending Christmas Day in a Pediatrics ward. And although I made a number of new ‘little friends', I'm sure I left them wondering why I was dressed in jeans and a T-shirt instead of a red suit and hat for the occasion.
So, these last few years have been a bit different than any other time in our past but please know that I shared this personal situation with you because as human beings we all face unexpected trials and tribulations. HOW we respond or react to them define us in such ways that all the planning in the world won't.
The three pictures above are 1) Sadie one hour after surgery in Duke's PICU; 2) Sadie 4 weeks post-transplant; and 3) Christmas 2018, age 4 ½ .
Feel free to follow Sadie on Facebook at TEAM SADIE GREY