Support Luke's Journey: Overcoming Medical Challenges

Luke was born at 23 weeks gestation after a very normal pregnancy and doctors are unsure why he was born so premature.

He was born on June 15, 2022 at 6:01pm at 1lb 8.3oz. after having to be resuscitated at birth. He spent 126 days in the NICU with a lot of ups and downs. He developed a brain bleed and was diagnosed with hydrocephalus. He had to get a VP shunt placement. He was also diagnosed with Brochopulmonary Dysplasia (chronic lung disease) and came home on oxygen. He still requires supplemental oxygen when he is sick or when traveling long distances. He developed retinopathy of prematurity and got Avastin injections in his eyes while still in the NICU.

He has also been diagnosed with cerebral palsy affecting his arms and legs which he sees PT for 4x a month when able. He has also been diagnosed with GERD and gastroparesis. He has been through several feeding tubes and got a gtube in March and a gj-tube in May. He is working with OT and ST 4x a month for feeding therapy. He also has a port-a-cath as his vessels are depleted from many hospital stays requiring IV’s.

To date, he has had 26 ED visits since being discharged from the NICU. He has had 16 surgeries related to his VP shunt due to the anatomy of his brain, he has several cysts and a lot of scar tissue resulting in a new diagnosis of multiloculated cystic hydrocephalus. He has had many He also had surgery to have his brain scoped to fenestrate several of the cysts. He has had surgery to have 2 ND tubes placed, Botox injections in his eyes for esotropia, gtube and gj-tube placement. We have had several hospitalizations for vomiting as well.

Luke has overcome so much and is truly a medical miracle. By all standards, he shouldn’t be here and we are so incredibly thankful for Carilion for continuously saving his life (literally) and investing in him.

Luke was recently admitted to the PICU on August 17 due to a shunt infection. He has two external shunts currently placed in his brain to drain the excess fluid on his brain. The next surgery to reimplant the shunt or shunts will be September 3 at the earliest. He has already spent close to 50 days on and off inpatient since June.