It’s a little hard to sit down and write about your journey with hydrocephalus as you know it is an ongoing journey that can change so quickly. Maylee’s journey began at her one year baby checkup. I had been a bit concerned that her head seemed big and sure enough it measured 53 cm that day. Off the chart big! Amazingly at that time Maylee was doing great developmentally except a little delay in gross motor skills. Our pediatrician decided it would be best to refer us to a neurologist just to be on the safe side though.
Three days later we had made the four hour drive from our rural community to see the closest pediatric neurologist. After examining Maylee and measuring all of our heads, his thoughts were she just has a big head. Her soft spot, which was still large and open, wasn’t bulging so he wasn’t too worried. We felt relieved and traveled back home.
Within 10 days Maylee projectile vomited a couple times and her appetite wasn’t the best. The sitter had called this particular day to tell me she was acting kind of out of it. Within an hour or so she was back to normal though. That night we had decided to eat supper out and as Maylee was sitting in the high chair she went into a gran mal seizure. Her lips went completely blue and she seized for several minutes that felt like forever while we waited for an ambulance to arrive. She was hospitalized locally that night until she seized again and was life watched by airplane to the larger hospital.
Once we arrived at the bigger hospital they started antiseizure meds. We waited 36 hours holding her off food and water before they could finally get her into the MRI, it felt like we were torturing her. Finally though the diagnosis; hydrocephalus. Surgery was scheduled and a ventriculo peritoneal shunt was placed. After several days in the hospital she was feeling good and we got to go home.
Maylee did great right after surgery and she even was crawling within a couple days. I naively thought our tough days were behind us. Little did I know it would start a nightmare of eight hospitalizations within the last four months, more life watch plane rides, weeks of vomiting episodes and little appetite, a bout of meningitis, delays in her development, frequent seizures despite being on meds and another surgery to revise the shunt.
Maylee is now 16 months old, her ventricles have still not went down in size. After seeking a second opinion and a two week stay in a larger children’s hospital she was diagnosed with reset osmostat probably due to her hydrocephalus. Her body has lowered her sodium levels and seems to have adjusted to them being low. Her body is also in metabolic acidosis. After routine vaccinations a few weeks ago she had seizures all night long and into the next day. The neurologist then added another seizure med and so far it seems to be controlling the seizures and has helped her vomiting.
Through all this we have learned to be thankful for the “normal” days. Maylee has an amazing, happy little personality despite all she’s been through. She is truly a tough little hydrocephalus warrior!
Tell us about your journey with hydrocephalus!
Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.
Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!
If you would like to share your story, please email it to: firstname.lastname@example.org with the subject line “Share Your Story”.
Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.