I've never had a doctor care so deeply about Nolan's medical situation as our new neurologist. She called me this morning, to reassure us about Nolan's breathing and to go over the game plan with the tonsillectomy.
We were (obviously) concerned with the apneas and the oxygen desaturations to 79%, and had asked about obtaining some sort of monitor. There are several reasons why a monitor is not feasible right now:
- We have no way to treat the apneas at the moment, so having an alarm without a treatment option is fairly useless*.
- Nolan's arousal mechanism is working perfectly, so he WILL wake up and start breathing again on his own, after each apnea.
- Nolan's apneas are approximately 10-13 seconds long. By the time an alarm went off, he would have started breathing again on his own.
- Nolan has 20 apneas per hour that result in oxygen desaturations of less than 90%. Having an alarm go off every 3 minutes throughout the night would simply leave us exhausted, and would not benefit Nolan in any way.
- The apnea monitors they use on infants with central apnea (prematurity or central apnea of infancy) will not work for a very mobile and active toddler.
Pulmonology does have some apnea monitors, but they do not work for mobile toddlers of Nolan's age and size. At-home monitoring isn't really an option in our case, so we need a different game plan. That game plan is:
- After the tonsillectomy/adenoidectomy/PE tube placement, Nolan will be placed in the pediatric intensive care unit.
- The post-operative/post-anesthesia time period is the most vulnerable for children with central apnea. If we are going to see a problem with oxygen desaturation, we will see it soon after the surgery.
- Tylenol with codeine will be trialed in the PICU, while he is fully monitored. We will trial the Tylenol with codeine during this 24 hour period. If he desaturates, he will be kept in the hospital until he is completely recovered and stable. If he remains stable, then we know the codeine isn't affecting his respiratory center and he'll be safe to take home.
*We are not treating the central apnea until after we receive the results of the MRI and second sleep study. We need to confirm the absence of the obstructive component, the severity of the central component, and verify the CSA is not caused by a Chiari malformation. If the CSA is caused by a Chiari, then surgery will be required. If the CSA is "idiopathic," then we will treat the apneas with a V-Pap (a specialized Bi-PAP machine used for central apnea) and will be referred to pulmonology.