So a lot has been happening in our sleep world. Let me catch you up a little: We had our sleep study, got the results, and I wrote a letter to both the main sleep center and the satellite center where we had the actual study. By the end of the week we had messages from both places acknowledging receipt of the letter. One said they would be following up and would get back to me, and the satellite center wanted me to return the call and answer a few questions. So last week I had a long conversation with the director of the satellite center. I wasn't sure what to expect, if he was going to listen or if he was going to dismiss my concerns or justify/defend his people and their procedures. He started to listen and said he would follow up after he gathered more information, but he also discussed the results of the report and said that I just wasn't understanding things and he asked how I wanted to continue based on the report and suggested that I speak with our sleep doctor to get some more answers. He also suggested that I go back to our pediatrician because she is supposed to be helping and treating this problem too. He also said that he would call our sleep doctor and have her call me back to answer more questions.
Then I got several calls about scheduling another study to titrate the CPAP, which is what we had decided in the last meeting with the doctor about the results of the study. The scheduler was almost humorous in her explanation of what the study would involve because that was one of my chief complaints. (All the phone calls and no clarification about the purpose of the study.) She made certain I understood what they would be doing during the night. So we have another study set for May, and we are on the cancellation list for an earlier appointment.
THEN I started getting calls from the doctor. I get the feeling that someone doesn't want to talk with me when they only call our home phone number. We are so rarely home and the time we are home is usually when their offices are closed (lunch time and after hours). So the doctor and I played phone tag for three days until she finally called the cell, even though every message I left included my cell phone number... So our discussion. Here's the highlights: The DME reports mean nothing. The data they gather is not regarded as useful because it is not an actual sleep study. The machine can only guess at what is causing a sleep disruption and mainly it cannot differentiate between central apnea and obstructive sleep apnea. Central apnea is not treated with CPAP and since that appears (according to the study) to account for more of the occurrences of apnea, CPAP is not indicated as needed. There is a recommendation to consider an evaluation for the causes of the central apnea. That was never addressed in our visit or in the phone call. My problem is that nothing has changed since the office visit, but the doctor's response has. She spoke with another doctor who told her to disregard this report. She didn't know to do this in our visit, but after being told by a superior, now she does. Now the story is that the DME reports are only used for compliance. And yes, we are complying with orders to wear the CPAP.
Next I asked about other sleep issues. What can a sleep study diagnose? Her answer based on what they monitor at this sleep clinic is as follows: sleep walking, sleep talking, restless legs, snoring, apnea, brain disorders while sleeping and cardiac problems (mostly caused by breathing/apnea issues). Seven things, and maybe some derivations of those things. I could have ruled out the first four without a study. That leaves only three things. If the study rules out those three, and Justin is still tired and cranky during the day, what are our options? Go somewhere else. This sleep clinic only helps with issues that can be diagnosed on a sleep study. There is nothing else. Not that there are not any other issues, but the sleep center does not deal with those issues. Our pediatrician is supposed to help with that. We are going back to her for Justin's 4-year appointment in a couple of weeks so that should give me time to research more and find other options.
And the wakings? They are actually arousals, which are changes in the levels of sleep to a higher level. There are three levels of sleep, REM being the deepest level. So an arousal is switching from REM to level 2, level 2 to level 1, or level 1 to awake (I think). And I knew we all switch levels as we sleep, but I didn't know they are called "arousals". So while Justin had more than the expected number per hour, it was only slightly higher, and not enough to warrant any treatment.
Then I got a what now. She wants to cancel our appointment and basically dismiss us from care since the sleep study showed nothing she can treat. I am hesitant to give up an appointment I worked so hard to get when she keeps changing her story. My decision should be based on her information and that keeps changing. She has flip flopped on several issues. I don't feel like I can make a solid, informed decision on such flimsy advice. She recommended we try some time without CPAP so that's what we are doing now. And it's not good for me. The nights are better, but the mornings are ridiculously early. Like the latest is 5:30 am. Some are before 5 am. Both boys are hitting and poorly behaved and Justin is exhasted by 9 am, which doesn't give me any time to do anything.
Do you ever worry about what lesson you are supposed to be learning in a certain situation? Like what if you aren't learning it? Or what is it preparing you for that's more difficult in the future? In my rare moments of a clarity I worry about that. I am so crazy and scattered that my mind can conceive of some pretty wild scenarios. I feel lost and confused and completely inadequate. Why cannot my children get enough sleep? How can I be such a failure? I have had a couple of meltdowns over this issue, encouraging some of my friends who believe me to be invulnerable. :) (Not the case for sure!) We have hit a wall and time is short. I am willing to hear suggestions and new ideas. I have to brainstorm all over again. Some kind of doctor who can help with sleep problems who is not a sleep doctor. It's going to take some time. And that frustrates me too...
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