I never thought I would create one of these, but here we are.
Many of you know Aiden’s story and of the struggles he has had to endure since birth due to his Hydrocephalus diagnosis. He has always been such a warrior, and he is again showing just how strong he is. In the midst of a battle with Hand, Foot, and Mouth disease and the Rhinovirus, Aiden’s VP shunt (to continually drain his cerebral spinal fluid or CSF) coincidentally malfunctioned. The buildup of CSF on his brain created immense pressure, which then caused Aiden to have his first-ever seizure on Wednesday, June 4th. Farroh and I called 911, and Aiden was taken to Northridge Hospital as that is where the nearest Pediatric ICU (PICU) is to our home. Six+ seizures later, Aiden was intubated and eventually underwent lifesaving brain surgery to drain the excess CSF and relieve the pressure on his brain.
The following day, Aiden was transferred to Cedars-Sinai Medical Center (where he was born and had his first two brain surgeries in 2024) to have a second surgery to put in an external drainage system to give Aiden time to regain some strength before a third surgery to put a new VP shunt system in. Aiden theoretically should have begun to come back to himself after this second surgery, but he instead was the opposite of the happy baby we knew. While Aiden laid expressionless and almost motionless in his bed in the PICU, Farroh and I really started to think we had lost our sweet baby forever. Due to his demeanor, Aiden’s neurosurgeon, Dr. Bonda, and team began to do an extensive analysis of the CT scans and also then had an MRI of Aiden’s brain completed. Dr. Bonda then delivered the gutting news that based on the imaging, Aiden had a stroke, and it was concluded that it occurred before his first surgery at Northridge Hospital. The stroke primarily damaged Aiden’s occipital lobe on the left side of his brain and a small region on the right. Additionally, there is damage to Aiden’s thalamus and cerebellum. The minutes, hours, and days after the news of the stroke were painfully long and the darkest of the dark, and we did not think we would make it through. We missed our baby so much, it literally hurt. And then, Aiden slowly started to come back to us. A tiny grin out of one side of his mouth, followed by his eyes widening to look around; any tiny step of improvement was celebrated.
When it was time for his third surgery on Friday, June 13th, Aiden was giving full smiles and was even trying to say a few of the 24 words in his impressive vocabulary. Kissing him goodbye before he was wheeled into the operating room was one of the hardest things we have had to do as we felt we were just getting our boy back and could not fathom going backwards. That third surgery to give Aiden a new VP shunt was successful, and we have since graduated from the PICU to the regular Pediatric unit as of June 14th.
While Aiden has made a lot of progress since June 4th, he still has a long road ahead. His smiley self has mostly returned, and he continues trying his best to use his precious little voice but his speech has not yet recovered. Because he cannot tell us himself, we are unsure of what and how much Aiden is currently able to see as he has a hard time focusing and making much of any eye contact. He is also currently too weak to hold his head up nor can he sit or readjust his body unassisted. And although his half shaved head will be considered very cool by most, Aiden is very sore where his incisions are on his head and tummy. Due to the stroke and multiple intubations, Aiden still cannot fully eat or drink so he has a feeding tube to nourish him. Because of these and other challenges, Aiden continues to work with Physical, Occupational, and Speech therapists while at Cedars-Sinai to help regain as much of his strength as is possible. We are now waiting to learn when Aiden will be transferred to the in-patient rehab program at Children’s Hospital LA (CHLA) where he will participate in three hours of therapies daily; the duration of that stay is TBD. Farroh and I will thankfully still be able to stay with Aiden while at CHLA during his rehab and ongoing recovery.
We are so thankful that Aiden has begun to recover, but we do not know how much longer he will be hospitalized and what kind of further home care, etc. he may require going forward. This series of events has put an unbelievable amount of stress on our family, and we appreciate ANY amount you are able to give to help towards medical bills, meals, future resources for Aiden, etc. Thank you so much for your support, Farroh and I are eternally grateful.
#AidenArthurStrong
