Gosh, as I sit down and write this I can’t believe it’s been over 4 months since Grace’s surgery. It all came and went so fast. I thought it would be good to recap everything about the surgery-mainly because I hope sharing Grace’s story will help someone. I remember when we first found out about the ETV/CPC story, I immediately went to Instagram and searched the hashtag searching for any information I could get my hands on. Finding other families who had gone through similar things-surgery, rehab, and MRIs was very comforting.
Rewind back til July when we found out that Grace’s second opinion from Boston Children’s Hospital recommended a surgery called an endoscopic third ventriculostomy in combination with a choroid plexus cauterization. We immediately called BCH to schedule the surgery, pre-op, and post-op care. We booked our flights and our Airbnb the next day and were ready to go. I went to grad school in Boston and Spencer lived out there for 7 years-so we were grateful that if we had to go through such a scary thing, at least it would be in a familiar place.
With a surgery date of August 11, we flew to Boston on August 5. Fortunately, flying in the middle of a pandemic wasn’t too stressful. We were exempt from having to quarantine/register with the state of MA because Grace was receiving medical care. We settled into our apartment in Brookline Village, went to sleep, and woke up on the 6th ready to spend the day at BCH. That morning we met with nurses and anesthesiologists to prep us for the surgery. That afternoon Grace had her first MRI in Boston. We knew over the weekend we had to play it safe, so thanks to takeout and some friends who dropped off groceries, we didn’t leave the apartment from Friday-Monday.
On Monday 8/11 we arrived early at BCH for G’s COVID test and appointment with her neurosurgeon. We were told that she’d get her COVID test results back later that day—they would call if she tested positive or a negative result would show up in her portal. That afternoon we met with her neurosurgeon, the man who invented the ETV/CPC, Dr. Warf. Honestly, it felt like we were meeting a movie star.
He explained to us that Grace’s FOHR (the measurement used to calculate the size of her brain and ventricles) had decreased since her last MRI. This was great news-but gave us a second of pause if we really wanted to go through with the surgery since it appeared Grace was showing some improvements on her own. After a conversation about Grace’s gross motor delays, we decided surgery was still the best route. We learned we’d get a call later that day with a surgery time, but that it would most likely be in the morning.
The remainder of the day was spent obsessively checking my email in hopes of receiving Grace’s negative test results. Our hearts nearly stopped when BCH called to tell us Grace’s surgery time-as we thought they were going to tell us Grace’s COVID test was positive.
Tuesday morning came and I woke up early to feed Grace knowing she’d be a hungry girl before surgery. Once we arrived and got checked in, we participated in a research study looking at bloodflow in the brain pre-and-post surgery.
Grace took a nice little catnap waiting for surgery before the whisked her off to the OR. In pre-COVID days, parents were allowed to stay with children up until they fell asleep in the OR. Because of the pandemic, this wasn’t an option. We then spoke with a kind nurse who said she’d keep us updated on her progress.
Spencer and I went to eat some lunch and not-so-patiently wait for surgery to finish. After what seemed like forever, Spencer checked in with the nurse asking for an update. We were informed everything was going to plan and that she’d be out soon. Not long after, Dr. Warf came to tell us that everything went as well as we could have hoped. Fluid was flowing through her third ventricle and he was very pleased with how it went.
A few minutes later, we went to post-op to see sweet Grace. I hadn’t been too emotional throughout the day, but at this point I lost it. A sweet nurse was holding and rocking Grace. The care and love she was giving her at that moment brought me to tears and it was another example of how incredible the staff at BCH was. Once I got to hold her, that same nurse gave me a little cup full of Grace’s hair. She figured it was her first haircut and wanted to make sure we had it as a keepsake.
After about an hour of waiting, we moved on up to the neurosurgery recovery floor. We were met by the kindest and most caring set of nurses who explained the next steps until we were discharged (hopefully the next day). I was incredibly grateful they let Spencer and I stay the night. Wednesday morning Grace was still pretty tired but was starting to be herself again. She had another MRI vent check early that morning before we were discharged that afternoon.
Doctors and nurses explained that it is very common for vomiting to occur as the anesthesia wears off. Grace was completely fine the rest of Wednesday but woke up on Thursday and had vomited. Knowing we had to monitor her fluid intake to ensure she didn’t get dehydrated, I fed Grace two more times, both of which she quickly threw up. It was at that point we called neurosurgery who instructed we head to the ER. Looking back, this was the scariest point of the whole process. Grace was such a happy-go-lucky kid. She is so easy going that we were worried we had done something wrong by having the surgery.
Once we got to the ER and explained our situation, we were met by the neurosurgeon on-call doctor and a pediatrician. They were concerned about increased intracranial pressure-especially if Grace’s ETV had closed. They suggested an MRI and fluids. Spencer accompanied her to the MRI and the news came back incredibly well. They said the fluid was flowing great and that everything post-op looked as good as it could. Grace was able to hold down some breastmilk and Pedialite and they discharged us.
Friday midday Grace woke up from her nap and was back to herself. This was the biggest feeling of relief having our sweet girl back. Later that day, Dr. Warf called us to check up on Grace. Again, the staff at BCH went above and beyond to take care of us and we couldn’t be more grateful.
The next week was spent hanging with Grace, exploring the city, having a couple socially-distanced outdoor gatherings, and waiting for her final MRI in Boston. During the trip Spencer and I took turns deciding where we’d have takeout and eating at some of our old favorite places. Our sweet friends also all chipped in and got us gift cards to many new places throughout the city which we loved trying. On Monday we went back in and met with Dr. Warf. He indicated that overall Grace’s MRI looked good. He said it was a little too early to tell anything and he wanted an MRI in one month (6 weeks post-op).
We spent the rest of the day eating Indian food, celebrating a successful trip, and getting ready to start our new normal. At that point, we couldn’t wait to get home to see Sophie, relieve the grandparents of their babysitting duties, and throw ourselves into Grace’s speech and physical therapy.
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