Aidenne, My 1 and a half years old baby born with Arnold Chiari Malformation II and Spina Bifida
She developed Hydrocephalus and was given Ventriculoperitoneal Shunt (minor brain surgery) and her spine was underdeveloped so she undergoes Lumbosacral mass repair whilst admitted in NICU for 3 months. In between 2 surgeries she was also diagnosed with Broncho Pulmonary Dysplasia and Sleep Apnea, also she was under observation for Laryngomalacia (swallowing disorder)
She got intubated (breathing through mechanical ventilator) four times during and after NICU admission. After those admissions we were told that she might need the oxygen support during her lifetime because of her low oxygen level. She was given Salbutamol + Ipratropium, Spironolactone and Hydrochlorothiazide as her BPD maintenance, pulse oximeter and a suction machine for the fluid secretions from her lungs. Since , she has swallowing problems she is prone to Aspiration Pneumonia that will cause her life.
From coughing frequently because of her lung condition, she developed Hernia in her right abdominal area, due to pandemic protocols at her hospital we were sent home immediately and was advised to do online consultation after she got discharged from Pneumonia last year April of 2020.
Also, we got a request from NICU for EEG (electroencephalogram) for seizure disorder. Due to lack of funds and no access of physical check-up all procedures were delayed due to pandemic and her transportation to the hospital.
Oxygen support (50 lbs. tank 2-3 x a month) 500 ml or 1L per minute
Spironolactone (5mg/pp tab)
Hydrochlorothiazide (5mg/pp tab)
Salbutamol + Ipratropium 2x a day
Our goal is to support everything my brave little warrior’s immediate needs.
Her path to recovery is all thanks to online community, family and friends especially to our God.
Thank you so much!