Our son has a rare disease called short gut syndrome. This means that he sees many specialists regarding his nutrition, and absorption of food/formula for adequate growth. This came about after a NICU stay and a diagnosis of NEC. He was also born with congenital hypothyroidism. At first, before the NEC, it was easy to control with Synthroid crushed and given to him via his NG tube in the NICU. After NEC, and resection of half of his intestine, this became impossible. His TSH was so high, it was possibly damaging his brain. At one point, it was over 200. We came to Cincinnati Children's to help him get the best care. And, although SBS syndrome is tough to navigate through, one of the hardest things was figuring out his dose of Synthroid. No matter the dose by mouth or gtube, it didn't work. Together, the team figured out how to titrate him off of IV Synthroid and onto PO/Gtube Synthroid. This made it possible to get his central line out since his gut was adapting so well and he no longer needed TPN. He had, at times, weekly blood tests checking his TSH and Free T4. Because of this we would talk to Bonnie weekly and navigate his Thyroid hormone and lack thereof, with her kind words and reassurance. This seems like such a benign thing, "just" congenital hypothyroidism. But, when combined with Short Bowel Syndrome, it felt impossible to ever get an acceptable TSH. Bonnie has been amazing! From the first day, when I spoke with her, just by coincidence, and she gave me her direct extension and told me I could call anytime, it meant everything to me. As a mother of a medically fragile child, I knew when his TSH was out of whack by how he was acting. She gave me power as his mother, saying that anytime I though he needed his labs checked, that I could take him in. Bonnie had spoken to Dr. R and there was now a standing order.
Bonnie is my lifeline with our son's endocrine doctor. As soon as he gets his labs drawn, I call her, let her know either that we have already or that we are going to get labs drawn. She greets me warmly with "Hi Sweetie! how are you?". She promises to call me back with a plan for his Synthroid, and always calls back, after speaking with the doctor and getting a plan together. I still have never met her in person, but she is so important to our family. I have her programmed in my phone, and always have so much confidence if I need to run something by her regarding his care. I spoke with Dr. R so highly about Bonnie, who agrees that Bonnie is amazing! She stated that Bonnie is what makes the endocrine machine run. We love you Bonnie!
Especially in the beginning, she taught me that Synthroid has to be given on an empty stomach, at the same time every day, if his TSH is high, she first asks if he's been sick, because if someone is sick, it can affect their TSH. Other medications that cannot be given with his Synthroid. That name brand was important to us, and she agreed.
Our son's TSH was very high. I was upset, tearful, she called back after looking at the result, she quietly and calmly reassured that we would get it figured out. She called Dr. R and got a plan together that day. She called me back twice that day and we formulated it together. Her caring and soft-spoken voice make me feel so at ease and feel like I have someone who really cares about my son.
She always calls and asks my opinion about the current new plan. Asking and always saying that I know best since I'm his mom. She gives parents as much "power" as we can have.