Caring for Colbie

Colbie Lynn’s Story from her mom

Colbie Lynn was always over the growth chart but proportional at all her well baby visits.

When she started kindergarten, we started noticing tremors with her fine motor skills. She was seen by a neurologist in Dallas. MRI was done and she was diagnosed with hydrocephalus due to aqueductal stenosis.

She graduated kindergarten and we headed to the hospital to have surgery. She had an endoscopic third ventriculostomy. We just had annual CT scans after this surgery.

Fast forward to September 20, 2024. Colbie Lynn had a headache off and on for less than 24hrs. She was sleeping on the couch and I would check on her every 20 minutes. Sometime after midnight I checked on her and she was not responding and was having a seizure. We took an ambulance ride to the hospital. ER and neurosurgery quickly got her to CT and it was determined that her ventricles were extremely dilated (more that her abnormally large ventricles) and she needed an external ventricular drain (EVD) to remove CSF and decrease her ICP (intracranial pressure). She then had another surgery on 9/24/24 (VP shunt placement).

October 12, 2024- back for another ER visit. CT showed the shunt was over draining her ventricles. We were admitted to PICU for observation. Shunt setting was adjusted and we were discharged to monitor at home and follow up in clinic.

October 24, 2024- back to the CT and office visit. Scans looked the same but she didn’t have symptoms.

November 30, 2024- she just didn’t feel well. That night she complained of headache.

December 1, 2024- she couldn’t sit or stand without screaming in pain so we went back to the ER. We were admitted to the PICU for the shunt over draining (slit ventricles) and she developed subdural hygromas (which was causing the spinal headaches).

December 4, 2024- Surgery to add anti-siphon device to shunt catheter, evacuate subdural hygromas and leave in subdural drains. Surgery went well and she came back to the room talking and moving all extremities. About an hour and half later, Colbie Lynn couldn’t move her left side of her body. Neurosurgery was called they diagnosed seizures (was not seizures) and pushed lots of medications.

December 5, 2024-we finally got another CT scan at 1:30am which showed a post op complication (bleed). She was taken back to surgery hours later to evacuate the subdural hematoma. She came back to the PICU intubated and on a vent.

December 6, 2024- her vent settings and vitals were extubation ready. She tried her best to breathe but she was struggling and using accessories muscles. She had to be reintubated. She remained on the vent for 14 days.

December 20, 2024-We did a trial high risk extubation in the OR with Dr. Patil (anesthesiologist) and Pepper (CRNA) both are amazing! I’m very thankful they allowed me to be in there for that. I knew immediately that she would not tolerate extubation and it broke my heart but I could see it hurt theirs too! We proceeded with a tracheostomy.

December 22, 2024- my baby girl turned 10 with a fresh trach and basically paralyzed (cannot follow commands)

December 24-25, 2024- Colbie Lynn and I spent Christmas in this room with her hot pink Christmas she has never seen….. Her dad and brother were a little under the weather and we couldn’t risk getting her sick. Talk about heart break.

December 26th- present- she will have moments of consciousness and she can communicate with blinks and eye rolls but she is lacking voluntary movement. I do believe she is still on some sedating medications and we are trying to modify those. We are at a standstill right now. She hasn’t improved but she hasn’t had any set backs.

Key notes- Her CT scans are constantly improving. The MRI did not indicate any strokes or damage.

She’s young and the brain is resilient!

Recovery from a brain injury can take a great deal of time (very hard for a controlling & impatient person to deal with)

We are on the hunt for an inpatient neuro rehab!!!!

My family can’t thank everyone enough for the thoughts, prayers, and gifts. While we have insurance, Louisiana is limited in what we can offer her in terms of neuro rehab so most will be out of network! Healthcare is a crooked business.

Lastly, the PICU staff at Ochnser LSU Shreveport are my guardian angels. They not only cared for Colbie Lynn but they helped me stay sane! They let me vent, cry, and throw tantrums. They helped me articulate my thoughts when my brain was barely functioning!!