A Life-Saving Decision – Part 2
Editor’s Note: This is Part 2 of Braca’s diagnosis story. If you haven’t yet read Part 1, start here. Learn more about the Beyond Type 1 x Diabetes NZ Kiwi Takeover here.
Following Braca’s period of stabilisation, we were transferred from Phuket to Bangkok under the care of the diabetes specialists at Bangkok Hospital. The luxurious five-star accommodation notwithstanding, there were some significant drawbacks to our situation. For one, when discussing medical education and treatment, language fluency is a must. I sat through sessions where the diabetes doctor smiled widely and repeatedly pointed to pages in a booklet translated to English, without being able to discuss the material it contained, or answer a single question.
The nutritionist walked me through lists of diabetes-approved foods, none of which fit our western diet. The doctor was very knowledgeable but her ability to transfer knowledge to me was very poor. I had travelled all the way to Bangkok to get training from the top experts in their field, but a week into the programme and I was still mystified about the disease.
Gradually Braca’s energy returned, and he took on the appearance and attitude of a healthy 4-year-old. Keeping him entertained in hospital was becoming more and more challenging. We both wanted out of the sanitised walls of the hospital, but I was far from being confident that I could take him into my care.
As a parent, it is mindboggling to lose the confidence of being able to care for your child’s basic needs. I would have to get comfortable pricking him for blood, jabbing him with a needle and micromanaging every aspect of his dietary intake. I would have to constantly survey his body for signs of a low. Is he sweating, pale? Are his hands shaking? Did he simply trip or was that the result of a sugar-crash?
Having a 4-year old self diagnose is an impossible task, so I would have to become his internal monitor from the outside. “You may have water, but no, you may not have a glass of milk,” I would tell him. Regimen and restriction—welcome to our new world.
We were finally booted from the nest following three weeks of hospitalisation and rudimentary training acquired predominately through sign-language. We were discharged, but we were not allowed to fly. Before we could cut the umbilical cord to our medical support team, we needed to prove we could keep Braca stable under our own care.
Excitedly we packed our bags and headed for a nearby hotel, ready for the next step. Rather than glide, we crashed hard. Not five hours under my supervision and we were racing through dense traffic back to the hospital with severe food poisoning. It was a painful but important lesson learned: caring for a person with diabetes is hard; caring for a sick person with diabetes is 10 times harder.
Over the weeks that followed we learned to take small steps, we learned to deal with each problem as it presented itself to us, and we learned not to look too far into the future. Our small steps took us further and further into Bangkok’s crowded streets, tunes to an absent audience in the wild blue yonder down muddy canals, up towering golden Buddhas and through vast shimmering temples.
We set out each morning with our tourist map, our insulin kit and the doctor’s direct number. Day by day we crossed items off the list of Bangkok’s finest attractions and wrote down blood sugar levels and calculated insulin doses. At the end of two weeks, we were ramped-up and touristed out. We’d proven to the doctors and ourselves that we could fly.
This brought us to our next quandary: Where to fly to? We looked at our options: Expatriation to America, repatriation to New Zealand, or to continue under the support of the team in Thailand. Each had its merits and its drawbacks. We’d been in contact with the Madison Clinic for Pediatric Diabetes at UCSF, a leader in children’s diabetic research and treatment, and Braca was accepted into their programme, however we weren’t guaranteed medical insurance coverage. We could repatriate to New Zealand and the diabetic team at Starship was ready to receive us, however it meant leaving the yacht in Thailand for an undetermined amount of time and our Auckland home was rented out. We could continue under the care of the Thai diabetic team and live onboard our boat but we were not prepared to transit oceans with a newly diagnosed child so travel would be restricted to Thailand for another year.
Eventually we chose repatriation. A return to New Zealand would get us another shot at a comprehensive diabetes training, this time in our own language. It is worth noting that our insurance was footing the bill for our medical expenses and incidental costs. In a stroke of luck, it was the first year we’d ever purchased medical insurance as a requirement for visiting the Chagos archipelago, a group of atolls in the middle of the Indian Ocean. Due to this planned stopover, we had paid for insurance and were consequently absolved of paying the substantial bills we’d incurred through our ordeal.
After a mere month on their books, we called on TopSail for assistance and they stepped up to shoulder the considerable burden of our diabetes-related bills. Their final action was to assign a flight nurse to escort us back to New Zealand. While they didn’t say it, their unspoken words were: “You are Starship’s problem now.”
In the next issue of Diabetes Wellness: The third and final part of Braca’s story: The family return to New Zealand under the care of Starship Hospital, where they learn how to look after him properly. Newly confident in their diabetes skills, they decide to return to their beloved yacht and set out—insulin-in-fridge—for Sumatra, Cocos Keeling, Chagos and the Maldives.
