Short story: Aidan has "Benign extra-axial fluid of infancy." It is harmless and simply requires followup visits to track the circumference of the head and make sure that it doesn't spike up in comparison with the rest of the body. If they REALLY play it safe, they would do another CT scan in 6 months or so, but as long as no symptoms become apparent, they won't need to do that.
Longer version in timeline format:
Monday morning: Anne takes Aidan to our pediatrician for his 4 month checkup, who sees that since his two month checkup, Aidan's head has grown from the 50th percentile to around the 90th percentile for largeness in comparison with the rest of his body. She then proceeds to say that she needs to talk to a pediatric neurologist about the possibility of hydrocephalus. This is of course a bit scary and upsetting.
Monday afternoon: I talk with our pediatrician who reiterates this to me and says her office is trying to schedule a CT scan as soon as possible, and that I need to make an appointment with the pediatric neurosurgeon, so I do.
Monday night-tuesday afternoon: We sit wondering about the possibilities for Aidan's diagnosis, but feel doubtful that there is a neurological problem based on the lack of actual symptoms and the fact that when they were infants, several of Anne's family had rather large heads for their age. Nevertheless, there is still a sense of worry. I also don't know much about CT scans so I'm a little worried about a fussy baby having a hard time with a noisy machine that takes 15 minutes to do its thing.
Tuesday 5:15pm: I arrive at the Arnold Palmer business office so they can do a bunch of paperwork before the CT scan.
Tuesday 5:30: Done with Paperwork, sit in radiology waiting room.
Tuesday 6:00: Still waiting.
Tuesday 6:30pm: Still waiting.
Tuesday 6:45pm: Finally go back, put Aidan on the table, wrap him and strap him in, with his pacifier, and I don the radiation vest and hold his chin steady. The scan lasts no more than 2 minutes, is rather quiet, and Aidan only fusses and tries to move a little. He stares at me the whole time. At the end, the tech tells me we'll know the results in the morning.
Wednesday 9AM: Still no word.
Wednesday 11am: I call the pediatrician, who explains something about the Aidan's history being mis-read, which puts the wrong twist on the radiologist's interpretation of the data, which means that the test must be read again by another radiologist, or the same one, who doesn't come in until the evening. So we will hear in the afternoon or the morning.
Thursday 9 am: Still no word.
Thursday 11am: I call the pediatrician, who has been trying to get them to send the report, but the doctor has not signed off on it so they won't disclose it.
Thursday 1pm: A person who will remain anonymous accesses the computer to find the report from the scan. Apparently, someone had written that the history was "microcephaly" (small head) instead of "macrocephaly," thus requring the re-read. Under all this is statements leading to "Findings likely represent benign subarachnoid collections of infancy. Followup is recommended to ensure resolution."
I find out more information online:
Benign extra-axial fluid of infancy
"At birth and for the first few months, the child's head circumference will be normal, but will suddenly start to grow rapidly over a short period of time. Since abnormal head growth is an indicator that hydrocephalus may be present, the child should be referred to a pediatric neurosurgeon for further evaluation. A CT series of the head will be ordered to check the size of the ventricles and for the presence of cysts or tumors.
When CT images return, the neurosurgeon will see that the size of the ventricles are normal or slightly enlarged, and there is no indication of an intracranial mass. What they will notice, however, is an abnormal accumulation of cerebrospinal fluid in the subarachnoid space (the area between the skull and the hemispheres of the brain). This is known technically as benign extra-axial fluid of infancy, and can also be called a benign subdural hygroma, or external hydrocephalus.
In cases of benign extra-axial fluid of infancy, the subarachnoid accumulation is normally reabsorbed by the time the child reaches 18 to 24 months of age. Once the benign extra-axial fluid has been detected, your child's neurosurgeon will require follow-up scans to ensure the fluid accumulation is being reabsorbed by the brain."
Thursday 3:10pm: I arrive with Aidan at the pediatric neurologist for a 3:15 appointment for them to interpret the data, and tell me what's going on (I'm not supposed to know already).
Thursday 3:20: Done with the intake paperwork, I sit with Aidan.
Thursday 3:45: Still sitting in the waiting room, Aidan's getting a bit fussy.
Thursday 4pm: Finally a tech takes me to a room, does the initial info-gathering, and says "the Doctor and P.A. will be right in."
Thursday 4:10pm: I decide while waiting to feed Aidan. Formula powder goes all over the place while I'm trying to make his bottle, meanwhile he's grunting and fussing. He takes 3 oz and then refuses to take any more. (he's been doing this a lot lately, but worse in public, unfamiliar settings.)
Thursday 4:30pm: The PA comes in and goes through the whole above diagnosis with me after checking a few things. She says she'll be back with the doctor to show me the scan.
Thursday 4:45pm: The doctor comes in to repeat again the whole diagnosis and says he wants to just follow up to measure the head circumference in Feb (why can't the pediatrician do this?)
Thursday 4:55pm: the girl at the front desk tells me to call in January to set up a follow up appointment (in my mind: "like hell I will") as I'm on the way out.
Thursday 5:00-5:40--I fight rush hour traffic to get home and Aidan screams the last 10 minutes of it because he's hungry.
I told you it would be a long story. What are your observations about the American healthcare system from this story?
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