“We are thankful for Cook Children’s, Dr. Thornton and the amazing staff that helped bring Brantlee home!” – Brantlee’s Mom
Brantlee arrived 6 weeks premature on September 13, 2015 weighing 8lbs 6.4oz at Hurley hospital in Flint Michigan. He went to the NICU after delivery for insulin levels above 300 and very low blood sugar. On September 18th, he was transferred to Children’s Hospital of Michigan. After genetic testing, doctors diagnosed him with Congenital Hyperinsulinism, a ABCC8 mutation.
They were going to send him to CHOP. His father received an article about Cook Children’s and sent an email to the writer. The next day we received a phone call from Dr. Thornton. Brantlee was transferred on September 25th, on a ventilator, D50 and a glucagon drip via PICC line. The research study PET scan suggested the diseased portion was on the tail of the pancreas. His first pancreatectomy was October 6th, but the biopsies showed good and bad cells mixed throughout his pancreas and 85% of his pancreas was removed. That night, Brantlee’s blood sugar dropped again. His second pancreatectomy on October 9th, removed all but 2% and a Gbutton was implanted. Still his blood sugar dropped and they believed his pancreatic cells migrated further. They discussed a third surgery to remove the remaining 2% and bowel reconstruction, which they decided against. His octreotide doses and dextrose rate changed several times. Dr. Thornton explained there wasn't much more they could do, they were prepared to send us home with his glucose checks in the high 40s. The day before we were set to leave his sugar dropped into the 20s and they decided to keep him. Sirolimus was our last option. Dr. Thornton was hesitant, but eventually Brantlee became the first in the US to be on Sirolimus for hyperinsulinism. He told us Brantlee is the worst case he's ever had and he didn't know what more to do for him. We were able to bring him home for the first time, on December 17th 2015!
Cook Children’s continues to assist in adjusting Brantlee’s feeds and medications and he is now off Sirolimus. At night he receives continuous tube feeds, bolus tube feeds 3 times during the day, eats some and is on octreotide twice a day. He went from 30-40 lows when he first came home to 3-8+ lows a week. Brantlee returns to Cook Children’s each year for a feeding study. We are thankful for Cook Children’s, Dr. Thornton and the amazing staff that helped bring Brantlee home!
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