We’re shipping up to Boston again, but this time for only 3 weeks.
So how did we get here? I’ve talked about bits and pieces of Grace’s hydrocephalus, but never about how we got here. I had a scheduled C-section with Grace at 39 weeks. I remember it snowed so hard the day after Grace was born, but by the time we left the hospital the snow had all melted. It was such an easy recovery and I got to go home a day earlier than anticipated. She was such an easy kid, it was like night and day compared to her sister.
Around 5 weeks old Gracie girl started vomiting while eating. Like not spitting up, but dry heaving, vomiting, not keeping anything down. A few days later a doctor told me she learned in med school that 1oz of milk is about the size of a piece of paper. I found this so helpful when someone asked me if my child threw up “a lot or a little.”
Back to the day in November-she was around 35 days old and she had just started sleeping 5 hour stretches at night. I was so proud. That day I called the pediatrician who suggested we head in for an appointment. Given Grace’s symptoms, she was concerned about pyloric stenosis and wanted us to head to Children’s ER in Aurora. After describing our symptoms to the ER doctor there, she was more concerned about a twisted intestine rather than pyloric stenosis. She immediately got Grace in for an x-ray and then sent us home.
The next day we had a follow-up at the pediatrician’s office with a different doctor. At this point we weren’t sure if Grace was throwing up or had reflux (I had no idea what the difference was). To be safe, she recommended that Grace start a reflux med, Famotadine, and that I eliminate dairy for about a month. My main concern was getting Grace to keep milk down and keep gaining weight.
That Friday Grace’s fever became pretty consistently high and she was still vomiting almost every meal. I called the pediatrician who agreed to see us late in the afternoon. He was convinced Grace had a UTI and sent us back to Children’s ER at the north campus. Ironically, we had the same doctor we had Monday night even though we were at a new location. I remember vividly how difficult it was for them to place an IV in Grace. She was so dehydrated that they had 4 different nurses try to place it. It was painful to watch them keep poking her, but eventually they placed an IV (praise!) We had an ultrasound to rule out pyloric stenosis and then they admitted us. Because Grace was still not keeping food down and consistently had a fever, they wanted to monitor her for the weekend. We had the sweetest nurse who gave me some cheerios and Gracie girl the loveliest pink chevron blanket that we still have. Additionally, she gave Grace a new yellow onesie to wear, since she threw up on her other one.
I fell asleep immediately and sweet Grace slept through the night. The next morning Spencer came and joined me, leaving Sophie with the grandparents. Grace’s fever started to break by the end of Saturday and she was able to hold milk down. I also learned at this point she did indeed have diarrhea, I just thought it was baby poop. By Sunday morning the hospitalist had ruled out most things and diagnosed her with a GI bug. He told us to keep taking her temperature and look out for a consistent fever/more vomiting.
Fast forward to Monday afternoon. Grace’s fever was back and the pediatrician recommended again we head to Children’s. Because we had essentially outstayed our welcome at Children’s North because they’re just a satellite campus, it was time for us to head back to Aurora. Spencer met us down there where we had the best doctors! Just like at the north campus, it was so challenging to place an IV. They ended up placing a tourniquet around her head and placing an IV in her head to keep her hydrated. After over a week of me struggling to describe how much vomit there was, a doctor FINALLY saw Grace vomit and said, “wow that’s a lot of vomit…” While we had a different ER doctor, we saw our old ER doc friend and waved at her :) Our doctor decided the best route to take was to place a spinal tap and test for meningitis. We left the room for this and when we got back, they admitted us for the night. Spencer and I fell asleep on the fold out couch and learned in the middle of the night that because of the inconclusive results on the spinal tap, they were going to start Grace on antibiotics for bacterial meningitis. The next morning we met the best group of doctors EVER. The doctor, the intern, everyone was so incredible, gosh I’m so grateful for them. We learned shortly after that cultures weren’t growing and it most likely wasn’t meningitis, again another GI bug. As long as Grace could keep a fever down and keep food down, she could go home. Every time a nurse checked in on us, I would get so anxious that Grace was running a fever. We got discharged on Wednesday and Grace was back to her sweet old self. She had lost about 7 ounces over the past week so our job was to get her to gain weight ASAP. Between increased feedings and her Famotadine, she was able to gain back her weight pretty quickly.
At Grace’s 2 month appointment, her head had grown quite a bit and jumped percentiles. Additionally, it was around this time it looked like Grace’s eyes were bulging slightly, particularly the left eye. We suspected it was a side effect of the reflux, but to be safe we scheduled an eye appointment at Children’s to be safe.
In January we saw two ophthalmologists at Children’s who said Grace’s vision was great. They did notice a slide lid retraction issue, but other than that noted no problems with her vision. Right after, we had a follow-up 3 month appointment to measure Grace’s head. She checked out just fine.
Spencer was working from home the day of Grace’s 4 month appointment and was able to take her. At this point Grace was unable to hold her head up during tummy time. Our pediatrician noticed another increase in head measurement and recommended an ultrasound to look for extra fluid in Grace’s brain. Additionally, she referred us to early intervention for an evaluation.
Later that day I took GG to Children’s for an ultrasound. I didn’t think anything of it. Spencer has a large head, as does Sophie, so I just figured another Kline kid with a big head was no big deal.
On February 12 while I was getting ready, Spencer called me to tell me that Grace did indeed have extra fluid in her brain. I had heard of hydrocephalus before, but never knew of the different types, the treatments, or really anything other than it meant fluid in the brain.
The next day we met with a neurologist in Denver who recommended Grace have an MRI of the brain and spinal cord as he suspected a tethered spinal cord. A week later we were back in Denver for our MRI. It was a loooong morning followed by a meeting with the neurologist. We learned Grace had communicating hydrocephalus...The next day we met with our neurosurgeon in Denver to discuss treatment options. After looking at Grace, measuring Spencer’s head, and looking at the MRIs, she determined that Grace had benign macrocephaly and that a surgery to place a shunt wasn’t necessary.
At the beginning of March we had our EI evaluation, where Grace qualified under a gross motor delay. Although COVID hit shortly after, finding our OT through EI has been one of the greatest gifts throughout this whole thing. As I write this today, Grace continues to get OT once a week. She has also had a speech/language evaluation.
Our follow-up appointments were complicated because of COVID. We had follow-up neurosurgeon and 7.5 month doctors appointments. At both of these, we were in charge of measuring Grace’s head on our own. Through all of this we’ve learned we’re terrible at measuring heads.
Everything was at a relative standstill until our second MRI at the end of June. Our rapid MRI was short and sweet. The hospital was incredible and we felt so safe, even given COVID. Our doctor called us that afternoon stating she couldn’t make a decision on Grace’s care before she saw her in person.
That next Monday Spencer took Grace in to see the neurosurgeon. Again, after looking at Grace and her scan, she just couldn’t justify a shunt placement. We were so thrilled to hear that she was still doing well!
Before this second MRI, Spencer and I decided we wanted to get a second opinion. The main reason was because if anything, it would give us peace of mind that two doctors didn’t want to perform surgery. The whole process of getting a second opinion was incredibly easy. We went through Grand Rounds and Boston Children's Hospital. After signing up (it was $675 and we used our HSA), a pediatrician contacted us to get Grace’s case history and explain the process. Once we agreed to send over our medical records, the process took care of itself. We knew that we’d be allowed to ask the specialist 8 questions about Grace. Our first and most important question was if Grace needed surgery. The other 7 questions related to her eye, future monitoring, etc.
On Friday, July 10 we saw that Grace’s records had been sent over to the doctor. Of course we spent the weekend googling the doctor and reading all his journal articles. We learned he had developed a surgery called ETV/CPC. This surgery is a combination of ETV: Endoscopic Third Ventriculostomy-poking a hole at the base of the third ventricle to allow fluid to go down into the normal CSF space and CPC: Choroid Plexus Cauterization-reducing some of the choroid plexus (tissue that creates CSF). Combining the two has a relatively high rate of success and Grace is at the right age to do it.
The following Tuesday the second opinion results came in, recommending ETV/CPC. He said that Grace has a larger than normal CSF space (cisterna magna). A mega cisterna magna is the most minor manifestation of the Dandy-Walker spectrum, called Dandy-Walker variant.
This past week we scheduled surgery at Boston Children’s for August. In total our trip will be a little under 3 weeks. This time includes preop labs, COVID testing, surgery, and a post op appointment and MRI.
The other day we were joking that at this age, Sophie had already been to 6 states (Illinois, Hawaii, Maine, New Hampshire, California, and Massachusetts). Grace’s first trip will be back to our beloved Boston. And although it will be for brain surgery, we are grateful and optimistic.
She’ll have follow-up MRIs at 2 weeks (still in Boston), 3 months, 6 months, and a year. Given her age, she should have a 70-80% chance of success in treating her hydrocephalus. We are so grateful to have found this surgery, this surgeon, and to have finally found a solution.
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