18/11/2022
Meet Bodhi; My water broke at 21weeks+4days. We were living in Louisiana at Barksdale Air Force base. He then came naturally just shy of two weeks later at 23 weeks and 3 days weighing 1 lb 3 ox due to PPROM.ย
He was intubated, GI complications, ROP, skin breakdown, and brain development issues which would eventually lead us to a cerebral palsy diagnosis.ย
He ended up hitting stage 4 ROP and the ophthalmologist preformed laser surgery. Unfortunately, a month later the retinas started to detach. We needed a more advanced NICU. The next day The Cleveland Clinic picked us up on a private medical plane.
By the time the specialist got Bodhi to the operating room, both retinas were completely detached with little hope that any of the intervention would help save his vision. He had his trach and Gtube placed in Cleveland due to CLD, BPD, tracheomalacia and laryngomalacia.
After 250 days in NICU, in two states, we went to a rehab facility in Cleveland where we were trained on taking care of Bodhi.
The department of defense chartered a plane with Phoenix Childrens Hospital staff that picked us up in Cleveland, and flew us to Phoenix. Once there, we stayed inpatient for a week to establish care and a new house! After a total of 326 days, we were home.
Bodhi came home not needing the ventilator. But we knew his airway was a problem. He has undergone one major reconstruction, where cartilage from his rib was placed in his airway to make more room. The surgery was a great success and we hope to be able to remove the trach in the near future.ย
We receive lots of great therapy services and are currently working on walking with his walker. We are involved with Foundation for Blind Children where Bodhi will eventually attend grade school. Currently he is in preschool with other medical children of all ages and he is a bit of a class clown.ย
Bodhi is a happy guy who brings us so much purpose in life. We see the world differently through him. His smile is truly authentic and contagious, we love him like crazy
๐ธ .s_world