Special needs dad blog: the Gort family

1.29.2011

Temporary (lack of) sleeping disorder

We’re very excited to announce - hopefully not too prematurely - that Gwen slept through the night for the first time since Dec 30.  You’d think that would not be such a big accomplishment for an eight-year old, but sleep seems to be discriminatory at our house.

Oh wait, since I first wrote that first sentence (several days ago), we’ve only had one other night when she has slept all night long [prematurely announcement complete].

It’s been a rather bizarre string of events that have lead us to this point.

When Gwen returned home just after Christmas from her ‘standard spinal fusion’ operation that turned into a tracheotomy, that turned into nearly 40 days in the PICU, that turned into sleeping soundly for the first two nights she was home, sleep started hiding from us.

We were heralding all of the nurses who said that Gwen would sleep much better after getting her trach.

That proved to be wrong, as almost every night since she has awakened with expectations of trach-suctioning, diaper-changing and other such luxury comfort requirements - even though she was not experiencing any pain or discomfort that we could tell.

At first, we attributed the awake periods to having her sleep patterns disrupted by the long hospital stay and the constant attention from nurses there. However, as each new night passed, we haven't been able to find a root cause for her temporary (lack of) sleeping disorder.

Now, with exception to periodic naps, we pretty much all running on empty.

At first, Gina and I started switching nights, then creating mini-first, -second and -third shifts designating who would attend to Gwen, but then eventually the other children joined in on the midnight-to-morning awake festivals and all hell broke loose.

Combine those events with two nurses in your tiny house first thing in the morning and throughout each day, you can imagine the type of powder-keg scenario that could (and did) occasionally arise.

After Gwen slept those first two nights, her next night of full sleep wouldn't happen until we started using a supplement called melatonin, which is naturally produced  by your body (not a recommendation, just stating this worked for us - albeit temporarily) .

The supplement, comprising primarily vegetables, is metabolized by your body quite quickly. This means that it's good for getting one to fall asleep but bad for keeping one asleep all night.

Our thought is that it would help fix her maladjusted sleep pattern (as it had proven to do for me once when I went six days without sleep after Eliza was born).

We have found that it really only works once, the first time of a dose. The next night, we'd be back where we started so the night after we had to increase the dosage (there is a maximum safe dosage just like anything else) in order to get it to start working again.

Since the first full night of sleep, she has had maybe another two or three more of full night‘s rest.
In fact, I’d guess that 90 percent of the nights, she has awaken at least once, which means that our household - primarily Gina and I - is not getting our required six-to-eight hours of rest.

We have even gone as far as getting a time-release version of the melatonin to ensure that it provides a steady dose all night long for Gwen, but she still is not getting a night-after-night-after-night's rest.

There’s even something worse than no sleep for her: Gwen’s overall health is at risk due to sleep deprivation. She is not even recuperating her sleep-loss at school or throughout the day, which means that she has had several small seizures since this all started.

We knew that 2011 would have many new goals, but who would have thought it would be getting our eight-year old to sleep through the night.

It's obvious that Gwen's temporary sleeping disorder needs a bit of order - so we'll be trying whatever it takes to get to that point.  In the meantime, here's to sleep deprivation.