Meeting the Sleep Specialist

Mom and Lyn met with the sleep specialist at the end of last week.  The doctor was kind, intelligent and really listened.  At the start of the exam, he spent over 10 minutes just talking to Lyn.

Lyn loved the directed attention and was engaged in the conversation.  She allowed him to check her nose but wasn't as cooperative for when he wanted to look at her throat.  She refused to allow him to use a tongue depressor and it took multiple attempts for them to get her to stick out her tongue long enough or far enough for him to peek down.  Her uvula is huge.  She still has her tonsils and adenoids.  Both the doctor and Mom think they're probably enormous.

After the physical exam, the doctor wanted to discuss the results of the oximetry test.  When Mom said the result was 38%, he said "Do you know what that means?!"  In essence, if Lyn didn't go on oxygen, she would most likely have died within a week.

The doctor then wanted to discuss the need for the sleep study.  In order to treat the underlying cause for Lyn's dramatic drop in nightly oxygen saturation, he needs to have a sleep study done.  Mom writes:

"I explained the problem of a sleep study right off the bat to which he responded, "So what am I supposed to do?"  He understood why I was saying what I did and said it was possible for me to be there with her but it wouldn't be a good study.  I asked about mobile units and he said yes he could do that.  However, he has found them not to be as good as the others since the data is compromised if the patient gets up to go to the bathroom.  He typically uses the mobile units for follow ups."

While Mom and the doctor were discussing the need for the sleep study, Lyn became very frightened and withdrew from the conversation.  Mom continues:

"It was very interesting to see her literally pull into herself when the conversation took the turn to discussing studies.  She had been animated, happy and engaging with him.  Now she was pulling into a fetal position while sitting in the chair, even her coloring changed.  This was more pronounced than I'd seen before.  She never came out of it till we pulled in front of day hab.  He said if we change our minds about the study, just call and he'll set it up "but there's nothing he can do without it."  He can't treat the underlying cause without knowing what it really is.  He stressed to her that she keep the oxygen on all night because that will help."  

Mom had discovered on Friday morning that Lyn had turned off the oxygen and removed the cannula during the night.  Mom had turned down the monitor so she'd not hear the sound of the oxygen unit but could hear Lyn cough, snore or call out.  Lyn has stopped sleeping with her door closed and when Mom had come into the kitchen, she realized she wasn't hearing the unit.  She looked in on Lyn, found her sound asleep without oxygen.  Mom had related this to the doctor.

"I should have been aware of not hearing the little beep of the machine.  I bet she's been turning it off each night, during the night.  I'll have to be more vigilant, keep the monitor up all the way and train myself to listen better during the night."
After Mom related all of this to me, initially via email, we had a conversation.  If Lyn continues to refuse the sleep study, then the root cause for the suspected apnea cannot be identified much less addressed.    Even if the cause is identified, Lyn could refuse treatment.  For example, if the adenoids and tonsils are restricting her breathing, Lyn could refuse to have them removed.  We discussed Lyn's removal of the cannula during the night and the potential for death.  Mom cannot be expected to go into Lyn's room hourly to ensure that the cannula is on and oxygen is flowing.  I stressed to her that she still needs sleep for herself.  It felt strange saying "If she chooses to remove the cannula and dies, I don't want you to feel guilty or to play what ifs."

As Lyn got ready for bed last night, Mom reminded her to keep the oxygen on.  Lyn burst into tears and eventually got out the statement that she doesn't want to use the oxygen even though she knows it helps her brain.  Mom assured her she would help put it back on if she needed help during the night.  Mom turned her monitor up all the way.  We'll see how it goes. 


  1. Lots of hugs! I know this might be an odd idea, but would they allow mom to sleep over with Lyn at the sleep study? I know it's a pain, but it might help the situation tremendously to get Lyn there. Sending prayers and love!

  2. Thank you for the comment, kind reader. The conversation with the sleep specialist was significantly longer than summarized here. The option of having Mom there with her was discussed. The doctor said it was possible but all three of them were concerned that Lyn just would not sleep and would spend the night crying because she was afraid of the test and afraid because she wasn't in her own room. Doing that to her seemed cruel and unproductive. They even discussed having Mom lay in the bed with Lyn to calm her but that would also throw off the results of the test. It is a conundrum and Lyn has the right to refuse the test or any subsequent treatment. Before she left the visit with the doctor, she flat out refused the test.

  3. Not to put too fine a point on it -- but *can* Lyn refuse surgery to remove her adenoids or tonsils or anything? Is she considered legally competent to make those kinds of decisions?

    I know you and your mom don't want to upset Lyn, but as an outside viewer/reader, it seems as though you are increasingly dealing with a child in an adult body, and sometimes children have to do things they don't want to do. I can understand "choosing your battles", but if this life or death kind of stuff, Lyn's feelings about what needs to be done seem less important in the grand scheme.

    And I say this out of sincere caring about your situation -- not intending to offend.

  4. Thank you so much for your concern. This is the fine line I dance on. Yes, she can refuse surg because she's an "adult" BUT if it was a case of imment danger then I can over rule. Damned if you do, damned if you don't.
    She did leave the O2 on all night and agreed it wasn't too bad. Right now I'm letting nature take it's course. Mixed feelings all the time

  5. We totally hear what you're saying AZThespos and do appreciate the feedback. No offense is taken. As her legal guardians, there is limited power to force medical decisions. It is a very gray area and one that medical ethicists struggle with. For example, we cannot fore her to take any medicine. We can remind her that it is time to take it. She can refuse. We can attempt to remind her 3 times. She can refuse each time. After the third attempt, we have to wait until the next time the medication is scheduled to try again. Mom, as her care provider, actually has strict guidelines like that to follow.

    Years ago, we looked into getting her on birth control. We learned that she could only receive it with informed medical consent. That consent, from her, was never forth coming which led to the super strict supervision of her dating life.

    The law recognizes Lyn as an adult. The law assumes she is competent to make her own decisions. To force the situation, she would have to be proven to be legally incompetent which is not a process we've discussed to date.

    Is her life in the balance? Yes it is because she could decide to take off the oxygen at night. However, even if we were to legally force an incompetent ruling, the question then becomes, would a doctor go forward with the sleep study of a patient, even an incompetent one, who is refusing and is scared? How is the test in that instance valid, meaningful or ethical?

    One final thought. If she were to pass in her sleep due to lack of oxygen, is that really the worst that can happen to her? She has a terminal condition already. She will die from the dementia within a few short years at best. Is allowing her death of natural causes wrong? Is it wrong knowing that it would save her more confusion, fear and pain?

    1. I'm afraid this all hits close to home because there has been dementia in my family. My grandfather suffered from dementia after a series of strokes. Because his wife, my grandmother, did nothing to assert control of the situation, he continued to drive even though he suffered from seizures, he had additional strokes, and his dementia worsened at a rapid rate. His life was shortened dramatically as a result.

      He was 72 when he died, but he could have survived much longer if certain steps were taken. My grandmother, however, felt it important that he "know" he was taking his medication and that he still be allowed to do whatever he wanted -- but in her case, she just didn't want the responsibility, and her narcissistic need to "win" was in play. I know that is not the case with your family, and I understand completely what you're trying to achieve with Lyn.

      I don't know the right answer, and I don't envy your position, but like I said, it hits close to home. My grandfather has been dead 19 years, and I still haven't forgiven my grandmother for how things were handled.

    2. Thank you so much for sharing your experience with us. I am sorry for what you, your Grandfather and the rest of your family experienced. There is an interesting and emotional debate on this topic going on over at MetaFilter.

      I think what it comes down to is that we want to keep Lyn as comfortable and happy as possible. We won't seek heroic or extreme measures to prolong her life. However, we also won't go to extremes to prevent her death, either.


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