Wednesday, August 24, 2011


The sleep study was an abject failure. How hard is it to flunk a test where all you hav to do is sleep? Well, for Maggie not too hard.

It started out with a bit of drama. I read every direction meticulously and followed them to the letter. I spent an hour getting all her morning meds ready, labeled and with copies of the prescription verifications according to the directions. Of course they couldn't use any of them. We came home and did her meds here this morning. 

.Also, I didn't bring anything for myself. My plan was to wait for her to fall asleep and leave her in the care of the critical care nurses in the ICU and the tech who was to be sitting the the room all night. My house is 10 minutes a way. I could sleep in my own bed for a few hours. The tech was clearly a little freaked out by maggie's extreme needs. and told me it was their "policy" that parents stay for the duration of the test. I told her I read everything cover to cover and it didn't say that anywhere. 

One of my chief complaints is the amount of work that is expected of parents when their child is in the hospital. And the more complicated the child, the more is expected of the parents. Of course I want to be there for my child, don't misunderstand. But I want to be her MOTHER for once in my life. She is scared and I want to comfort and care for her, not be the unpaid medical assistant. 

Momma was not pleased by this unwritten, unspoken "policy".Maggie is being charged for a bed in Intensive care, there is a lovely competent nurse assigned to her, they all know Maggie (she was greeted like a rock star) and Maggie wasn't even sick. The tech went to get her manager. Steve dealt with them as I went upstairs to visit someone I know who was inpatient. This "policy" was being explained to him when the nurses in the ICU overheard what was going on. Seems no one asked them what they thought.  When they got wind of the tech's position they said that's ridiculous. Of course we can handle Maggie. Admittedly, most parents want to stay, they want to provide the comfort for their chlid. i want to do that too, but I don't get to. Most parents don't have to a child that sleeps with a nurse by her side every night. Maggie is comfortable with it, we are comfortable with it, and we deal with this 24 hours a day 7 day of the week. 

Turned out to be moot, because Miss Maggie never fell asleep. And neither did I.She went in with a great attitude and cooperated as much as Maggie can when the probes were put on. But she simply could not take the CPAP. It freaked her out. One side benefit that was bittersweet - with the trach sealed and the air going in, I coul head Maggie's "voice" for the first time in years. That was great - but the sounds she was making were sad and that was not great. She did not like the pressure going into her lungs. She flailed and acted a bit panicked every time it was hooked up. 

For an idea of how the night progressed, here are the before/prep and after pictures.


  1. Oh -- I think my face looked much like Maggie's when I saw those two photos. I am so sorry that you had this frustrating experience. I just don't understand why you don't get a freaking break.

  2. Oh good grief. She's a young adult and is confident and comfortable in that environment. She has a right to space away from you - and vice versa! Typical hysteria around severe disability... I wonder if they'd demand the same for a young woman the same age who is not as severely physically impaired?

  3. Maggie's "after" photo says it all. I feel the same way almost every morning after sleepless perimenopausal nights. I feel for both of you.

  4. Dang you MUST be tired!!! Go home and get some rest!!!


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