Nolan in front of our local ice castle
We headed up to the ENT yesterday to discuss Nolan's recent hearing loss, the obstructive apnea, the central apnea, and to inform her of his "staring spells," which may or may not be seizure activity. The appointment was at 3:30pm, but the ENT's office is frequently overburdened and we didn't get in to see the doctor until 5:00pm.
The general plan is:
Central Apnea:
The ENT will not treat or handle this, as it is a neurological issue. We already have a neurology appointment lined up for March 1, so the central apnea will be discussed there. In the interest of "getting the ball rolling," the ENT did order an MRI to be completed as soon as possible. Preferably before April 13, for reasons outlined in the obstructive apnea discussion.
She did reassure us that Nolan's arousal mechanism is working just fine, so he is not in any danger for the time being- as long as we don't give him any sedatives.
The ENT doesn't really know about the possibility of Arnold-Chiari (not her area of expertise), but an MRI will show if one has formed or if there is something more sinister going on. Hopefully, it will show absolutely nothing. Idiopathic central apnea sometimes resolves on its own, so we're definitely hoping for idiopathic here. Our insurance company is known for being particularly terrible about approving imaging studies, and Buffalo Children's has only 1 day per month for sedated MRI's, so getting the MRI done before April 13 seems dicey.
We will also be scheduling another sleep study, probably for sometime in May, to check on the status of his obstructive and central apneas (hopefully the obstructive will be completely resolved by then).
Obstructive Sleep Apnea:
Nolan's tonsils are not enlarged, but due to the findings of the sleep study and the chronic fluid-in-the-ears issue, the ENT wants to do a tonsillectomy, adenoidectomy, and place bilateral PE tubes again. She'll be placing Reuter-Bobbin tubes this time, as they have wider flanges and should be retained in his eardrums a little longer. The surgery is scheduled for April 13, and the ENT would like to have his MRI completed prior to the surgery.
Because Nolan has central apnea, things get a little complicated with the anesthesia. He will be placed in the pediatric ICU following his surgery, and be monitored there for 24 hours to ensure he doesn't stop breathing due to the anesthetic. He will be discharged with a prescription of tylenol with codeine for pain management, and we will have to ask the neurologist about the safety of the codeine with his central apnea. We do not currently have a pulse-ox meter with an alarm to monitor Nolan at night, though that may change after our consultation with the neurologist.
A follow-up sleep study will be scheduled about a month after surgery to verify the obstructive portion of Nolan's apnea has been resolved.
Ears:
Background: Nolan lost about 30dB in his high frequencies (his left ear went from a 50dB rising to 30dB loss to a flat 60dB loss). He does not have fluid in that ear, but did have a small perforation. His right ear had some negative pressure at the time of testing.
The ENT looked in Nolan's ears and noted the left ear looked fine, but the right ear is full of fluid. The current plan is to place bilateral PE tubes and repeat the hearing test. If the conductive component is still there, then we'll call it a permanent mixed loss and increase the amplification on his hearing aids.
The only negative is that the PE tubes won't be placed until April 13, so we will have to postpone his next booth test. He'll be under-amplified for a bit longer, which isn't ideal. In the scheme of things, however, breathing is more important than hearing. The neurology and MRI workup will take precedent over the hearing issues for the time being.
Staring Spells:
Again, this isn't under the ENT's jurisdiction, but we did inform her that Nolan has been having "staring spells" and had an EEG performed last Wednesday. The results are not in from the EEG yet, so she wrote the possible seizure activity into her notes. Once we find out if there are (or are not) seizures, we can more accurately document that in his file.
So, to recapitulate, our spring is going to be extremely busy. The schedule (as it now stands) is:
March 1: Neurology consultation
March/April TBD: sedated MRI
April 13: Tonsillectomy, adenoidectomy, and bilateral PE tubes set #3
May TBD: Follow-up sleep study
May 24: Follow-up ENT appointment
2 comments:
Leah,
You always sound so calm and composed... I admire that. Praying that insurance issues get resolved smoothly so the appointments can progress.
My, you are going to be busy.
Julie
Yuck! We've had seasons like that - it's no fun.
Is Tylenol with Codeine the only option with that surgery? When Noah had his first CI his lungs were not in the greatest shape and we had long conversations about the pros and cons of various pain killers prior to surgery. I don't recall all of it (he never needed more than Advil anyway) but I do recall that Tylenal w/ Codeine was one of the worst one because it can suppress breathing. It might be worth asking about if there's not a specific reason that he'd need that drug.
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