Kyle has been sick since July 13th. He's been vomiting every day, he can't and won't eat. All he wants to do is stay in bed. I've noticed he is laboring more than normal to swallow, breathe and speak. I've been trying to figure out what happened; why does it seem his Chiari symptoms are returning all of a sudden. Kyle had a CT scan on the 13th. I was there. Nothing seemed to have harmed him. We saw his CT scan results on the 16th with the P.A. and the results looked good. Of course, the CT scan is mostly to see how his fusion is looking. It cannot show how his spinal fluid is flowing.
The P.A. on the 16th said Kyle's fusion is complete from top to bottom but the bone itself is not thick enough so he will be wearing his halo for at least 3 more months. Devastating to Kyle because he was hoping to be able to go back to school. Anyway, I explained to the P.A. that Kyle has been sick since the 13th but she didn't feel it was anything to do with his Chiari.
Four days later, I take him to see his regular pediatrician because he was getting worse. His pediatrician wasn't in on the 20th so we saw a pediatrician that was available. That pediatrician prescribed Kyle a nausea medicine that cancer patients take.
Four days later, Kyle still isn't better. His voice is nearly muffled. He won't stand or walk. He won't eat. I email a desperate message to the neurosurgeon. First thing the next morning another P.A. calls me and tells me to take Kyle to get another CT scan and then come see her. When we met the P.A. she said no change in the scan from the one on the 13th. So they don't know why he is feeling the way he is. I mention he needs a MRI. We need to know if his spinal fluid is flowing correctly. She calls the neurosurgeons, whom were in surgery at that moment, they tell her do the MRI immediately.
2 days later, we are rushed in for a MRI. Two MRI technicians and three radiologist were there during the session. And Kyle's neurosurgeon was reviewing the images live from his office. Kyle was in the MRI for about 1 1/2 hours. I stayed in the room with my hand on his leg so he knew I was there.
After the MRI we were told to immediately go to his neurosurgeons office. His doctor needed to speak with us.
We get to Kyle's doctor office. It is now after hours. No one is around except us and the neurosurgeon and his team. The neurosurgeon examined Kyle and appeared very upset. He asked us if Kyle has had any accidents or falls. He showed us the MRI images and explained Kyle's spinal cord shows signs of trauma. His spinal cord is swollen and the spinal fluid is pooling at one location. My heart dropped. Kyle, with his muffled voice, says, "Am I going to have more surgery?" "Not for this, Kyle, not yet," says his Dr.
Kyle's doctor prescribes a steroid for him to take for the next 2 weeks. The hope is the meds will reduce the swelling. The hope is Kyle's voice will return. The hope is he will start to feel better.
Sad Ending to a New Beginning
4 years ago