Tuesday, July 9, 2013


I've heard multiple parents of medically fragile children talk about PTSD (Post-Traumatic Stress Disorder). It's something I've learned a bit about over the last two years. I take anti-depressants and have lived with the chronic nightmares, but every now and then, PTSD rears its ugly head at unexpected times. I don't mind if this long post goes unread, I simply need to get out my thoughts and emotions.

Let me start by saying that private duty nursing (PDN) has been a huge help. Aside from some scheduling issues, we have been able to get (a little) more sleep, and pass off a few duties to Norah's nurses. Norah is pretty stable at night. She only needs monitoring, suctioning, humidifier refills, and assessing throughout the night. To that, we've added some cleaning items, a couple feedings, a respiratory treatment if she wakes before the end of the shift, and the like, to the nurses' duties. It is important that Norah gets plenty of rest at night. We give her more ventilator support at night than in the day. Every little activity during her waking hours are a workout, so we need her to conserve her energy as much as possible. After all, growing is a key part in her overcoming her respiratory issues.

So last night, we had a new nurse. I trained her but had the nagging feeling that I was forgetting something. Also, she had very few questions. (Yes, I am now going to put a written document together detailing Norah's needs so I don't forget anything in the future.) I fell asleep around 1230 or so, but woke at about 330 to the sound of Norah's labored breathing in the monitor. It was the "sound" of her crying. I went downstairs to find that our new nurse had just completed trach cares (cleaning the stoma/hole and neck, changing the trach ties, and placing a new drain sponge). What I neglected to tell the nurse, was that we simply let Norah sleep through the night. She's always been a great sleeper. She may wake a couple of times if she needs to be suctioned, but will otherwise snooze sweetly. We need her to.

She commented that Norah didn't seem to like trach care. Norah was sobbing. As I comforted her, I kindly said that she hated trach cares in the hospital, but since coming home, Norah doesn't mind when I do it. Jeff has said many times in these last weeks that he is amazed when watching me do Norah's trach cares. She looks up at me with trust in her eyes. If she cringes at all, I talk to her sweetly, or sing to her gently. She seldom cries when I do her cares.

So Norah was traumatized, taking in short gasping breaths. I was traumatized. I had found my girl beyond upset, and the nurse stepping away with the medical supplies. Something about it stabbed my heart. Then I realized what it was. You see, I don't blame the nurse. She was only doing her job to the best of her knowledge, training, and skill. After all, it had been my responsibility to tell her that I did the twice daily trach cares during Norah's waking hours. The distress that I felt was a culmination of all of the times that we've had scares with Norah. It was every time she turned blue. It was when she died for nine minutes. It was every ambulance ride. It was the middle-of-the-night phone calls from charge nurses, telling Jeff and I that we needed to come in. It was her inability to vocalize her fears and pain. It was helplessness while watching her struggle. It was every painful procedure she endured while we did what we could to soothe her. It was sheer exhaustion caused by two years of stressing about my daughter's life. It was PTSD. (I could link many more old posts, but you get the point.)

The nurse was quite well-intentioned when she verbally confirmed that we were new to private duty nursing. When I said that we were, she stated that when Norah gets "better" about trach cares, that it will help give us acuity points. For each item requiring the nurse's attention, Norah gets a certain number of points. These points are what help qualify her for the Medicaid waiver. It allows Norah to have medicaid due to her technology dependence instead of her family's financial status. There is no way I will put Norah through that in the middle of the night - even if it means that we had to give up nursing and Medicaid altogether. This isn't about relinquishing control. Norah needs security, confidence, and sleep much more than she needs those other things.

I like to think that we are very easy-going about Norah's cares. We aren't neurotic about specific things at specific times, or about nurses doing certain things a certain way. We've learned the hard way that the few "rules" that we have must be documented and outlined. Who would have thought that letting her have a good night's sleep was one of them?
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