Kyle still vomits every day, he still can't sneeze normal (I know this sounds weird. I'll explain in a bit), he still has headaches daily, has high blood pressure, his voice is still muffled/hoarse, and he still does not breathe in his sleep. Frustrating!!
By-the-way, no word from the speech therapist since the barium swallow test. I didn't think we would anyway. The test was a waste of time because I know there is nothing she can do.
So, remember on Nov. 5th I posted that one of Kyle's neurosurgeons mentioned that Kyle's brainstem is compressed. He based this on Kyle's Nov. 2nd CT scan. He told us the odontoid (bone) is the cause for the severe anterior compression of the brainstem. Based on Kyle's images it appears the compression is on or near the medulla oblongata area of the brainstem. So I researched what the medulla is responsible for and I read it contains the cardiac, respiratory, vomiting, and vasomotor centers and deals with autonomic, involuntary functions, such as breathing, heart rate and blood pressure. Yikes, right? So, we had to wait from Nov. 5th to Dec. 9th for another MRI to be done.
So, Kyle had a MRI on December 9th. (Kyle had his birthday a week before this appt....he's now 13).
We met the neurosurgeons and team on Dec. 11th. The neurosurgeons immediately started asking us if Kyle had fallen recently. Which he hasn't. Kyle hasn't done much for months because he feels so yucky. Then they tell us they are not sure why BUT Kyle's spinal cord is swollen.....AGAIN!! At this point I wanted to scream 'I knew it!' but I was thankful knowing Kyle would be prescribed steroids again to fix this problem. It hurts me to think about how long Kyle has been suffering from this swollen spinal cord. I have no doubt that it has been swollen since before the halo was removed. Now, this doesn't mean he is out of the woods for the face-splitting procedure. The doctors mentioned the procedure again but says they will address the issue next month after his spinal cord heals. For now, they put Kyle back into a full brace and he is on steroids for about a month.
SNEEZING ISSUE: For some reason when Kyle has to sneeze he basically sneezes inwards and then it causes him to vomit. He cannot launch a sneeze outwards like a normal person would.
Sad Ending to a New Beginning
4 years ago