The results are in... and they are not what we expected!
When a doctor calls you at 6pm on a weeknight, you know you're going to hear things that are likely to turn your work upside down again!!
"Ms. W this is Dr. G. I have JD's sleep study results."
"Oh hello Dr. G. Yes."
"Does JD have a history of seizures?"
- heart sinking, gut punching, loss for words.
So as we discuss further I find out his full results.
During JD's study he had "seizure like activity" but was not observed having an actual seizure. So this led to more questions than answers!
So fast forward to our appointment this week.
We first did his hearing test. If you ask him, he can hear normal sometimes. Then there are times where everything is so loud that a pin dropping will make him scream and cry; while at other times it's as if things can't get loud enough to hear anything! The results of the test showed he has normal hearing. So it was determined it was neuromuscular in aspects and that there is nothing we can really do to help. They feel it is caused by a neurological firing that cause the sound change.
Following that, we did our follow up with his ENT.
JD has moderate sleep apnea. When this is was first presented to me during our phone call, he mentioned that in children they typically jump into surgery to remove the tonsils and adenoids, as they typically limit space and cause the problem. However, he said he wanted to do a physical evaluation on JD again.
So after this careful evaluation, it was determined that both of those things are normal in size and not causing any hinderance. So surgery would be pointless and only cause him pain that he doesn't need. The issue isn't physical in nature, but again neuromuscular. It is the nerves causing the breathing issues while he sleeps. So it appears that he will be heading towards getting a CPAP. Which isn't his favorite choice, as kids don't typically sleep still and this will limit his movement.
But we are holding off for a couple months. JD is scheduled for a follow-up MRI in October, and he wants to see those results before he determines exactly what kind of machine we are looking at. Depending on if the MRI is showing new pathways forming, further damage or stagnation of progress, we will choose the best plan of action for him. My hope is we see new pathways forming, and that just maybe... JUST MAYBE this is temporary and we can see no need for it in the future.
In the mean time, his ENT planned on e-mailing the head of anesthesiology at the hospital to inform them of his findings. To ensure that they know exactly what they need to do and how to handle the situation when JD goes for his MRI. Since he now has this new issue, it may be necessary to ensure he is sedated with oxygen to prevent a repeat of his last MRI where he stopped breathing and was intubated.
Which leads to our question about JD's vocal chords and how they are doing. We originally discussed doing a scope on JD to see how they were functioning, as he fears that there may be some paralysis in that region. This he was wondering from JD's aspiration issues, as well as the location of lesions on the MRI. However, at the appointment we decided to hold off. JD has had a lot of poking and prodding, and at the moment he has not had aspiration pneumonia for some time. So we will revisit the scope at our appointment in October.
Then we got to the elephant in the room. The aspect hanging over my head. As I mentioned, JD was having "seizure activity" on his EEG in his sleep, though he never had an actual seizure at that time. He said typically this activity is only seen in individuals that do experience seizures. I asked if this activity was associated with his episodes of apnea, and he said the two were not correlated and occurred at different intervals and times. So my hope that the brain was firing to get him to breath was not to be.
This information was sent to JD's amazing neurologist, who I was already e-mailing regarding all of this. We have determined that we are going to do an EEG on JD while he is awake and it is his neurologists recommendation to avoid surgery as well. That was his recommendation PRIOR to the ENT's physical exam, but I still wanted to go through the steps to be sure it was the right one. The reason I felt this was our path was that JD did not snore or have apnea prior to being ill.
So again... this disease has lead to more questions, few answers and just another hurdle in the long road we have ahead.
But it's a road that we are all walking together, as a family. We will overcome this. And one day...one day we will say this was a memory that made one of the greatest men I know.
