Hi my name is Sebastian Roshe De Torres, born on February 21,2019. I am weighing 8.42 pounds. I am currently admitted here at Neonatal Intensive Care Unit (NICU) of Tricity Medical Center. I am staying here at NICU since I was born. I was diagnosed with Congenital Hyperinsulinimic and Hypoglycemia; status epilepticus 2 to hypoglycemia; Neonatal Sepsis Small PDA, Small VSD; Neonatal Hypertension. hyperinsulinaemia is a condition in which there are excess levels of insulin circulating in my blood relative to the level of glucose. hyperinsulinemia can result from a variety of metabolic diseases and conditions.
at the NICU I was placed under the radiant warmer and was hooked to a pulse oximeter which showed 94 to 97% oxygen saturations. I was given supplemental oxygen.
There was an episode of apnea and cyanosis. Apnea is defined by the cessation of respiratory airflow. they pricked me with a small needle to check my blood sugar and it was very low.
I was referred to neonatology service for persistent hypoglycemia and seizure.
Myoclonic jerks on the upper right and lower extremities were observed. Myoclonic seizures are brief shock-like jerks of a muscle or group of muscles.
Another seizure was noted, I was reffered to Neurology Service
neurology service made rounds and my 3rd seizure was noted and I was intubated and hooked to a mechanical ventilator. Many laboratory tests was done to me.
my skin turned into color yellow because there was no sun inside the NICU, phototherapy was done to me. It was an artificial sunlight.
I was reffered to cardiology service because neonatal service noted cardiac murmur. I was seen by the cardiology service no interventions on noted cardiac findings. consideration it was just a physiologic murmur. Thank God.
I still have fluctuating HGT, which means I cannot reach the normal range of blood sugar, that's why I was reffered to endocrinology service and she started giving me hydrocortisone every 12 hours.
I am being pricked with a needle for them to check my sugar every 4 hours.
Last March 9,2019 surgeon had to cut down my left ankle for the reinsertation of my IV but the vein was to small so the surgeon cut down my left cephalic vein, they reinserted my IV but it was leaking so he decided to cut down my right cephalic vein and reinserted again my IV, but after 24 hours it was leaking again. they decided to cut down my right saphenous vein it was a large vein that can be use for a long time and they reinserted my IV.
My last bullet was the compassionate drugs (diazoxide) from Austria and I am hoping and praying that it will work on me because if not, I have to go on a pancreatectomy surgery.
I am knocking on your doors, asking for help as I don’t want to lose any hope again of living a normal life just like other babies. I still want to grow, to explore, to play and to fulfill my dreams. Please help me fight this battle.
We also appreciate donations directly made through any of the following local (Philippine) bank:
Russelle I. Balingcos (mother)
4895 0404 1552 7205