The Caregivers Side – Christina Cook

On November 29th, 2017, my daughter went to school with a stomachache. I received a call from the nurse stating she had started throwing up and I went and picked her up from school. She continued throwing up for a while. She had a headache, so I gave her Motrin, and she threw that up. I have her Tylenol a little while later and she threw that up. I called the nurse line and we talked about what was going on. She said she would call back in a couple of hours. My husband came home, and I left to go pick up Christmas presents. My husband called and said I should call the nurse because her head hurt, and she kept crying. I came home and the nurse called after several questions she told me to go to urgent care.
I argued on which one to take her to, but we went we sat there, and my daughter kept saying how heavy her head felt. We finally saw a PA. She was concerned because my daughter could not put her chin to her chest, so they sent us to the ER after a consult with the doctor. The doctor wanted to do a lumbar puncture thinking it was meningitis. They said we would be in the hospital for a couple of days to make sure it was not bacterial. A little while later the doctor asked if we thought the original doctor had hit a vessel or anything. We said no. They put us in a room and had us wear masks. I slept in a chair, while my 8-year-old was in a ton of pain.
In the morning, the sent her for a CAT scan. The lumbar puncture showed a lot of red blood cells. We barely made it back to the room before the doctor told us that we would be flying to Children’s National. We arrived and were taken to the ER and tons of doctors came in. One stayed with me, which I think was a neurologist. They said a specialist would see her Thursday – It was Tuesday. They finally arranged for the interventional radiologist to come that night from Johns Hopkins, and they performed an MRI. By then my close friend and husband had arrived. I was still in a daze.
The interventional radiologist preformed an angiogram to try to block what we had learned was an aneurism with an AVM. After several hours, we were told they could not block the aneurism and would be moving her to Johns Hopkins for follow up care. By then we knew we would need to call family in to take care of our oldest. The next day we were ambulanced to Johns Hopkins. As they wheeled her into the PICU, a whole team of doctors came in saying the only thing I remember- “This is fixable”.
We were there from December 1-9 and went home on my daughter’s birthday. We had to return on the 14th for an embolization and blocking of the avm. We had two more embolizations on March 5th and May 10th and a final surgery May 14th. During her first embolization she had an anaphylactic reaction to the contrast. We had to preside her for future angiograms. In December following her embolization we had to take her to the ER due to a UTI, originally fearing the worst. After May’s embolization she had to go to the ER for a secondary allergic reaction. She did go back to school from December- May and even finished up the last two weeks with her classmates. She had strep twice through this and all her illnesses create headache pain and stomach aches which scares us all.
My daughter is now in 5th grade. She plays the viola and takes guitar lessons. She is full of energy and constantly wanting to try new things. We have had some bumps here and there. She talks to a therapist who has helped making goals to ease anxiety. She has lower left peripheral vision loss, but you would not know it. She is getting ready to start volleyball season and planning on cheering in the fall. Her school goes back to school full time Monday. School has gone well through the pandemic.

We are down to yearly neurologist, low vision, and ophthalmology appointments. She had an MRI last summer and showed all is good! Her next appointment with the neurosurgeon is in two years! She gets worried she will never be well. But each day, week and month things go back to what we call our new normal. I am so thankful for the doctors that out egos aside and sent us on to some wonderful care. I am so thankful to have my little girl.

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