ENT

Well we had the much anticipated ENT appointment today with an amazing doctor at Children's. He actually listened start to finish with Sam's history as well as the most recent scary events. He listened to my fears regarding the bleeding disorder and the concerns of being so far away. He isn't 100% sure what is the cause of the breathing issues lately so he is going to do some testing first but if surgery is the plan he went over it all...
He said before he even examined Sam by the sound of his voice that his adenoids must have been very large. The doctor seems like he is excellent and very thorough. He let me ask all my questions and took the time to explain things to me. Essentially once the testing is done and the determination is made as far as how urgent the surgery needs to be done: he will have a plan from Sam's hematologist, and will pre-treat Sam with blood products pre-surgery. Sam will then spend a couple of days in the ICU after the surgery, and then to a regular hospital floor for a few more days at the minimum. He then would like for us to stay locally so that we are close to Children's in case of complications, and thankfully we have friends and family out there. So although I am absolutely terrified and overwhelmed at the thought of what the next few weeks are going to entale, I am so thankful that we have a plan in place. A plan that seems safe for Sam, and cautious and well planned.
He then went on to say that he wanted to clarify the exact type of apneic spells that he is having, so that he won't be doing surgery if it isn't the true cause of the respiratory distress. He is wondering if his apnea is central apnea or obstructive apnea...

FROM WEB MD:

"What is central sleep apnea?
In central sleep apnea, breathing is disrupted regularly during sleep because of the way the brain functions. It is not that you cannot breathe (which is true in obstructive sleep apnea); rather, you do not try to breathe at all. The brain does not tell your muscles to breathe. This type of sleep apnea is usually associated with serious illness, especially an illness in which the lower brainstem -- which controls breathing -- is affected. In infants, central sleep apnea produces pauses in breathing that can last 20 seconds.

How is central sleep apnea diagnosed?
If you have some of these symptoms, or if a family member or bed partner notices that you stop breathing while sleeping, you should talk to your doctor or healthcare provider about the possibility of sleep apnea.

Your doctor is likely to perform a physical examination, take a medical history, and recommend a sleep history. The next step will likely be an overnight sleep study called a polysomnogram. This test is performed in a sleep laboratory under the direct supervision of a trained technologist. During the test, the following body functions may be monitored:

electrical activity of the brain
eye movements
muscle activity
heart rate
breathing patterns
air flow
blood oxygen levels
After the study is completed, the technologist will tally the number of times that breathing is impaired during sleep and then grade the severity of sleep apnea. In some cases, a multiple sleep latency test is performed on the day after the overnight test to measure how quickly you fall asleep. In this test, patients are given several opportunities to fall asleep during the course of a day when they normally would be awake.


What is sleep apnea?
Apnea literally means "cessation of breath." If you have sleep apnea, your breath can become very shallow or you may even stop breathing while you are asleep. This state of not breathing can occur up to hundreds of times a night.

What is obstructive sleep apnea?
Obstructive sleep apnea (OSA) -- also called obstructive sleep apnea syndrome -- occurs when there are repeated episodes of complete or partial blockage of the upper airway during sleep. During a sleep apnea episode, the diaphragm and chest muscles work harder trying to open the airway. Breathing usually resumes with a loud gasp, snort, or body jerk. These episodes can interfere with sound sleep. They can also reduce the flow of oxygen to vital organs and cause irregularities in heart rhythm."