We are venturing into new territory this month. On July 24, Gabe will go in to the hospital for his first, and hopefully only, brain surgery.
We’ve known that Gabriel had ventriculomegaly (a milder version of hydrocephalus) since before he was born. In all his months in the NICU it never grew and didn’t cause a problem. When we went for his genetics appointment, the doctor noticed his full fontanel. During an ultrasound that day, his hydrocephalus was discovered. We saw the neurosurgeon a few weeks later and after looking at him she suspected that he would need surgery a few months later to relieve the buildup of fluid. Gabe’s two options for relieving the fluid were a shunt or an Endoscopic Third Ventriculostomy (A procedure where they put a camera down into his brain and use a blunt object to make a hold in his third ventricle. The fluid is then able to drain properly and is reabsorbed into the lining of the brain.) . Because of his brain anatomy and his age, Gabe is a good candidate for the ETV. There’s about a 5% chance of the hole closing up and then the surgeon would have to go back in and place a shunt but we will cross that bridge if, and when, we come to it.
Last week we went for a checkup with the neurosurgeon, Dr. Notarianni, and she noticed that the veins in his head were popping out a little bit more than before and his fontanel was bulging more than last time so she recommended we do the surgery sooner rather than later. She believes the reason his hydrocephalus is increasing now is because he lays on the back of his head so much. Lying flat the majority of the time is causing crowding in the back of his brain and thus, making it difficult for the fluid to drain in a timely fashion. Dr. Notarianni also recommended Gabe be fitted for a helmet which will over time correct the shape of his head and hopefully help relieve the hydrocephalus along with the ETV. So Gabe will be getting another accessory soon!
Great news on the esophageal dilation front! When we went for Gabe’s dilation last week the surgeon saw that he had held the measurement from 3 weeks ago! We will have to come back at the end of August to check and see if Gabe is still holding at 14.5 and if he is then we will try even more time in between each procedure. Hopefully soon we can stop the dilations all together!
On Friday, I was bragging to Dr. Boykin (Gabe’s surgeon) about making it 3 months with no line infection. I was so proud of us! Then on Friday night Gabe ran a fever. We ended up taking him to the ER that night because we couldn’t get his fever down. The doctor put him on antibiotics and sent us home. On Saturday afternoon, the home health nurse came out and did a peripheral draw for a blood culture. Then on Sunday evening we ended up taking him to the ER in Shreveport because he had started having bad diarrhea. They discovered that Gabe had a UTI so they gave him a shot of antibiotics and told us to keep him on the antibiotics he was already getting from the ER visit on Friday night. We got home about 2:30 Monday morning and a couple hours later I got a call from our home health agency saying that Gabe’s blood culture had come back positive. Great. Since he was already acting like he was feeling better and wasn’t having fever anymore, the doctor decided to let us stay home but she switched him to IV antibiotics. We’ll have to stay on the antibiotics for the full 10 days but so far all of his other blood cultures haven’t come back. No news is good news when it comes to blood cultures. Busy busy weekend but we are glad Gabe is feeling great again! Restart the clock on no line infections, dadgummit!
Less than one month till Gabe’s first birthday! We are so excited! I’ve always said that I wouldn’t be one of those moms that had the huge birthday parties. But when you’re baby struggles to breathe for the first few months of his life, you feel like he deserves to celebrate his first birthday in a BIG way. I’ve promised myself that the next one will be smaller….maybe.