A night in the Life

I’m not sure that many people who ask about Liam understand how literal I am being when I say ’round-the-clock care’ in terms of Liam’s special needs. It means what it says. Due to the ventilator, but more importantly the seizures, Liam needs someone to be at least somewhat awake and alert every minute of the day.

I get asked about it all the time. “Why does Liam need nurses at home?” they ask.

“Liam doesn’t.” I tell them “It’s his Mom and I who need the help.”

So for anyone curious about how we actually achieve “Round-the-clock Care” in our house here’s the schedule. We’ll call it

The (Lack of) Sleep Schedule.

Night Nurse Nights. (mon & tue)

8:30pm. I get home from work.  Dinner time and then playtime with Liam.

10:00pm — Liam gets a couple of medicines at 10:00 along with the start of his ten-hour overnight feed so we get those set-up and change Liam into his pajamas at the same time. After that we have a little more time alone as a family to relax a little bit.

10:45pm —   We get Liam comfy in bed and make sure his room is stocked with anything the nurse may need overnight.

11:00pm — Night nurse arrives and after giving report Karin and I get a break. We watch TV for a little while and are usually in bed by midnight to try to get a nice long night’s sleep.  It doesn’t happen often though since our own sleep schedules are hardwired into the other schedule. The real schedule. Because for the other 5 nights a week the whole thing looks a little something more like this….

No Nurse Nights (Wednesday through Sunday)

8:30pm — I get home from work.  We eat dinner and then playtime with Liam.

10:00pm — Liam gets a couple of medicines at 10:00pm along with the start of his ten-hour overnight feed so we get those set-up and change Liam into his pajamas at the same time. After that we have a little more time alone as a family to relax a bit.

11:30pm —  Bedtime for Liam and his Mom.  We get Liam all comfy in bed together and then Karin heads upstairs to go to bed alone.  I stay downstairs and sit with Liam for a few hours.  He gets another med at 12:00am, which I give to him and once/if he gets into a really deep sleep I take the baby monitor with me and retire to the couch in the living room.  I watch TV and goof off on the internet while listening to the slow peaceful breaths of Liam and his ventilator down the hall. If he is in a deep enough sleep I might drift off a bit of sleep myself on the couch but it is rarely restful.

4:15am — Karin and I switch places.  Karin wakes around 4am and comes downstairs. I give her report and we check the board to communicate if any Tylenol or motrin was given on my “shift” and I head upstairs to catch as close to 40 winks as I can manage. Karin takes her own “shift” on the couch listening for seizures or vent issues.

8:00am — Liam’s overnight feed ends and another med is given.  Karin takes care of these and with any luck Liam gets back to sleep pretty quickly afterwards.

10:00am — Liam is woken up and the Olson family starts the day.

Rinse and repeat 5 nights a week for about 3 years.

Parenting is the never-ending discovery of newer, stronger and more debilitating levels of exhaustion. Every time I think that I couldn’t be any more tired BAM! a new level of fatigue rears its ugly head and along with it, forgetfulness, distraction and moodiness.  Oh it’s awesome.

But you react, and you get used to it, and you just keep plugging along.

You’ll see by the tag on the left that I’m posting this on a Tuesday night. [Update: I didn’t post until after midnight so it says Wednesday, but I wrote this on a Tuesday, I swear.] That means there’s a nurse here right now.

What the hell am I doing still typing this for all of you then?

I have no idea.  I’m going to bed.

Talk to you soon.

5 comments

  1. What I do not understand is how in the name of holy hell do you NOT qualify for some kind of Nursing or other help every single night? I know of people who have this kind of service for their kids who have far less issues than Liam, and it baffles me.

    1. Yeah, we actually do qualify for more but finding well trained nurses (especially trach and vent nurses) who are willing to work overnight in someone’s home is difficult. The agency has never been able to fill all of hour approved hours. Also the importance of nurse/patient/family chemistry cannot be overstated. Just because a nurse has the right certificates doesn’t mean that they will “fit” here caring for Liam making the task of filling those hours damn near impossible.

      But even if all of our alloted hours were filled we’d probably still have to do this 3 or 4 nights a week.

      We deal. It’s the only thing we now how to do.

      1. I have questions for you about that and many things. Maybe too many. I’ll save it for another time and place.

        Still, shocking that you would not qualify for EVERY day. Blows my mind.

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