Late June of 2023 at the age of 3 Celine was diagnosed with polymicrogyria. The right side of her brain did not develop properly and she suffers with half a dozen seizures per day! Her speech is deteriorating.
Celine had her invasive sub-dural surgery on March 18th at 9:37am, it was a 4 hour surgery. This surgery included a right front temporoparietal craniotomy for insertion of subdural grinds on the brain and intracranial depth electrode. We have decided to go the root of a sub-dual (Partial) hemispheretomy, where they will disconnect 1/4 of the front of her brain so the frontal lobe and temporal lobe, since most of the seizures start from the temporal lobe. This has a 70% chance of being seizure free. She will have 1/4 blindness in both eyes, loose some function in her left arm, and we don't know if the left leg could be included in this could be paralysis in the left leg but she will learn to stand on it and walk with it stiff like of a peg leg.
March 28th, Celine had a 7 hour surgery again to reopen the incision to allow for the removal of the electrodes and front disconnection, insular disconnection, anterior corpus callosotomy, T1 corticecotomy. Post operatively developed CS leak through incision, then later purulent material began to be expressed. Celine had a bad infection inside her brain from the subdural grids. She tested postive for MRSA (Methicillin-resistant staphylococcus aureus) and needs to be opened again to have it cleaned out.
April 3rd, Celine had 4 hour surgery of the right front temporoparietal craniotomy with irrigation, washout, and debridement of bone, skin and subgaleal and epidural space and evacuation of epidural abscess. She was initiated on a sick week course of IV vancomycin via PICC line )due to end May 15th
May 9th, Celine went to a kids rehab hospital, 5 hours away from her home and lived there until August 1st. She celebrated her 4th birthday in the hospital. She completed intensive physio therapy, occupational therapy, and speech therapy. She had to relearn to hold her head up, eat and swallow thin liquids again without the ability to feel the left side of her body. Celine learned to walk again with the help of leg braces, and a walker. She uses a wheel chair for long distances as she was tolerating up to two hours twice daily of walking. Bum scooting using half her body to move around on the ground. She completed her IV anti biotic and things seemed to be doing well, her incision was healing.
Then July 31st, Celine's incision reopened on her head. On her discharge date from the kids rehab hospital, the plan with the medical team was to stop in the ER on the way home. The surgical team hoped it was impetigo even though it tested positive for MRSA which was inside her wound back in April. She was given oral anti biotics to take home for 10 days 2 different kinds. With the promise of a follow up the next week. She had an allergic reaction to 1 of the anti biotic upon check up it was decided to stop that anti biotic and extend the other 1 anti biotic for another 5 days hoping it clears. We were told if she spiked a high fever and starts vomiting to go into the ER. On the last say of anti biotic the wound seemed to look better but she spiked a high fever of 103.9 and started vomiting, then drooling uncontrollably.
August 18th, Celine went to the ER waited 8 hours then was admitted after blood work showed her inflation markers and white blood cell count was high. MRI and lumbar puncture came back clean. Infectious disease examined her and felt her head, Celine Winced. The specialist thought the infection was in the bone. This is dangerous because there is a blood supply in your bone and the infection can very easily go sepsis this way. Your body protects the bone which would protect the infection. A CT scan was completed, the next morning we were told she needed emergency surgery to remove the bone flap that had been severely infected over the last 6 months to the point where the bone died and started to crumble on her brain.
August 21st, Celine had a 4 hour surgery at 7 pm. Celine had craniectomy that is a procedure during which a portion of the skull is permanently removed and replaced later during a second surgery after the swelling has gone down, Irrigation and wash out. A removal of unhealthy skin and scar tissue from head. Celine then started vancomycin treatment through IV an every 6 hours and each treatment is 2 hours long, has been happening ever since. This treatment has to be monitored in the hospital with weekly and sometimes bi weekly bloodwork. Too much of this medication can cause renal failure. We are not sure how long the anti biotic treatment is going to be, infectious disease told us it could be 3-6 months, occasionally up to a year since this classified as a chronic infection because it did not clear in 6 months. We do know after the anti biotics how long Celine will be with out a skull, we are told it is common practice to have it off for a couple of months and be sent home wearing a helmet. Then Celine will need to have surgery again to put a 3D printed skull on her head. Since March 18th, she has only been home for 2 weeks.
Please keep Celine in your thoughts and prayers.
