(I wish to be clear that I do not have, and do not
claim to have, a nursing degree of any kind. However, the term “nurse” has
broader meanings that I feel are valid and apply to the following scenario.)
My name is Liz. This is Nico, my beautiful nephew.
Nico is a little over two years old and has a
fairly extensive list of medical issues. There isn’t one diagnosis to cover all
of his ailments, but they are numerous and he is essentially a two-year old
infant. He can’t even hold his head up on his own. Because of his medical needs,
he requires round-the-clock monitoring and care.
Although my sister is fortunate enough to have
insurance that (for now) provides enough nursing hours to care for Nico in
their home during the day, and respite care for some nights, for three nights a
week she is primarily responsible for monitoring Nico during at night. It isn’t
easy, especially when you have two other young sons (ages 5 and 3) who are full
of energy and a house to take care of. I knew, intellectually, that it wasn’t
easy for her, and I’ve always helped where I could, but I didn’t fully
understand how hard it could be until I took over my sister’s night shifts.
My sister was in a car accident a few weeks ago
that shattered her right wrist, requiring surgery and a shiny metal plate and
screws to put everything back together and keep it there. My first thought when
I heard about her injury was “How is she going to be able to take care of Nico
at night?” After all, not only would she not be able to lift anything for weeks
with an injured/healing wrist, but she herself would need plenty of rest in
order to heal. My second thought, immediately after the first, was “She’s not
going to have to worry about it. I got this.”
I spent the night with my sister in the hospital
the night of the accident, the night before her surgery, while her husband was
with their two older sons at the ER, ensuring they were ok after the crash. (They
were just fine, in case anyone was wondering.) As soon as I could, I let her
know I was taking over for her at night until she got the green light from her
doctor to resume normal activities. I didn’t ask her if she wanted me to do it,
or if it would be ok with her. I just told her how it was going to be. And I
told her husband the same thing, later. I didn’t want them to worry for a
single moment how they were going to manage. (For those who might be wondering
why her husband didn’t take over the night shifts…I have no doubt he would have.
He is a wonderful husband and father. But I knew he was going to have his hands
full during the day taking care of the boys, the house, AND my sister. And
although he was able to take some leave from work, he would have to go back at
some point. There was no way he would be able to keep all that up AND take care
of Nico at night, too. I mean, there is a reason Nico has a full-time nurse
assigned solely to him during the day. Taking care of him really is a full-time
job).
Like I mentioned before, I knew, intellectually,
that it was difficult. But knowing it in your head is different from
experiencing it firsthand.
Here’s how my nights would go, generally speaking:
7:45 pm: start putting together my night bag (toothbrush,
change of clothes, etc.) Make sure my kids and husband have whatever they need
from me before I head out for the night.
7:50 pm: arrive at my sister’s house. The commute
is brutal, let me tell you. I have to walk the whole 20 feet from my front step
to hers. (We live literally next door to each other and I love it. This is
probably the easiest part of my whole night!). Sign out the daytime shift nurse
and get any relevant information from her about how Nico is doing.
8-9:00 pm: spend time with Nico. This could be
anything. Holding him, talking to him, reading to him, or just chilling with
the little man.
 |
| Hanging out with my buddy Nico. |
9:00 pm: start getting ready for bedtime. Here’s
what I do:
Make sure all
Nico’s monitors and other essential equipment are moved from the living
room (or wherever) into his bedroom. I plug everything in and make sure
all the tubing and hoses and things are there and properly attached and
that the power strip is turned on.
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| Pulse oxygen monitor to the left. Feeding station to the right. |
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| Oxygen machine. It lives in the hallway and the tubing runs into Nico's room. |
Get Nico’s crib
ready. He sleeps on a foam wedge that keeps him propped up a bit, and he
tends to shift around at night. I make sure his bedding is clean (and
change it if necessary) and that his blankets and positioning pillows and
things are set up and ready for him.
Get a diaper and
wipes ready for his last diaper change of the night.
Set up my
sleeping space in front of Nico’s crib. This is a couple of mats, combined
with pillows, sheets and blankets, that I assemble each night and then
tear down each morning. I sleep in Nico’s room (or wherever he is
sleeping) so I can hear if his monitors go off. This makeshift bed is
incredibly comfortable, surprisingly enough.
 |
| This is my bed before it's set up. |
 |
| And this is my bed after! |
9:30 pm: get his food for the night set up. Nico
has hypotonia (low muscle tone) which affects not only his skeletal muscles,
but internal muscles, too…like the ones we use to swallow our food. Nico can’t
swallow well, and aspirating his food is a real problem, so he has a permanent
feeding tube (called a g-tube or a button) placed in his tummy. He gets feeding
that lasts through the night (the night feeding is necessary because it’s the
feedings are time consuming in general, and it can be difficult to get enough
calories in him during the daytime, especially if he has physical therapy,
doctor’s appointments, or anything else going on.)
 |
| This is what Nico gets to eat. To the left is the bag the Pediasure goes in, and you can see the tubing as well. |
9:45 pm: draw up Nico’s 10pm medicines into
syringes (the oral kind, not the sharp needle kind).
9:50 pm: Change Nico’s diaper and put him in
pajamas if necessary. He’s usually in his PJs when I arrive. Lay him down in
his crib and make sure the following is done:
Connect the
pulse-ox monitor to his big toe. Put a sock on his foot to help the
monitor stay on. Turn the monitor on and verify that it has a good
connection. If it isn’t on properly or firmly enough, I won’t get a good
read of his pulse and oxygen levels and will need to reposition the
monitor on his toe.
 |
| Tonight we put the monitor on his left big toe. Tomorrow it will go on the other big toe. |
Connect his
feeding tubes to the button on his tummy. Give him his medicine through a
medicine port on one of the tubes. Make sure the dose and rate for his
feeding are set appropriately and start his nighttime feed. Wrap a burp
cloth or small, lightweight blanket loosely around his tummy to help
prevent his hands from catching the tubing and popping it out of his
button. After all, we want the food in him, not on him!
 |
| This is what it looks like when the feeding tube is connected to the button. The button has a flap that closes when he is not being fed. Here, Nico also has his cannula on for his oxygen treatment. |
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| The little purple off-shoot by my thumb is the medicine port. You just pop the stopper off, insert the syringe tip into the medicine port, and inject the meds that way. Just make sure you remember to close the stopper afterward! |
Turn his oxygen
machine on and put on his cannula. Putting it on him isn’t terribly
difficult, but keeping it in his nostrils through the night is near
impossible. The simple action of him turning his head can cause those
suckers to pop right out of his nostrils (even when I tape the tubing to
his cheeks!) But I just have to do the best I can and re-insert it
whenever I notice it’s popped loose.
Double-check to
make sure none of his hoses or tubings are tangled, kinked, or otherwise
blocked, and that he is comfortably situated. Place a lightweight blanket
on him. Turn off the lights in the room.
10:00 pm: Supposedly I can go to bed at this point
too but it never quite happens that way. I change into my own pajamas and get
myself ready for bed at this time, plus I like to wait about 30 minutes to make
sure everything is going ok with Nico before I lay me down to sleep.
10:30 pm: Lay down and get as much sleep as
possible. (And good luck with that!)
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| I'm all ready for bed too! I like to put the pulse ox monitor on the floor right next to my sleeping pad. That way when it beeps it's right at my eye level, and I don't have to sit or stand up to see it and reach it. |
5:30 am: wake up to my phone alarm (if I’m not
awake already). Check Nico’s monitors, oxygen cannula and feeding tube to make
sure everything is as it should be. Start getting his 6:00 am medicines ready.
6:00 am: give Nico his medicines through his
medicine port. Make sure you pause the feeding before opening the medicine
port, otherwise when it pumps, it’ll pump the food right out of that port and
all over your hands! Re-start the feeding pump. It will be almost done by this
point, but not quite.
Once Nico’s feeding is done, if he’s awake, get
him up, change his diaper and clothes, and bring him out into the living areas
and hang out with him till the daytime nurse arrives at 8 am. If he’s asleep,
let him sleep!
8:00 am: Let the daytime nurse know how the night
went, making sure to include anything medically relevant. Keeping a log during
the night of things like how many seizures he had, when he had them, or if he
had a fever, etc. is extremely useful.
That’s the basic schedule. Between 10pm and 5am,
though, anything could happen.
The first week was pretty brutal, to be honest. I’d
watched Nico before, it wasn’t that the feedings and medicines and special care
were new or scary to me. But my mother was out of town that week and I’d
already arranged to cover her night shifts (she alternates nights with my
sister). Now that I was covering for my sister, too, that meant I had the night
shift every night that week. The first two nights, Nico had a viral infection
and was feverish and throwing up. I got virtually no sleep either night. The
rest of that week was fairly uneventful but was still extremely exhausting. Let’s
just say I understand why my sister schedules the night shifts so no one person
has two nights back to back!
In the four weeks I’ve had night duty so far, most
nights have been good nights or normal nights, but not all of them.
One night, he stopped breathing. His pulse-ox
monitor had beeped and I looked at it, expecting it to show me his heart rate
was high (99% of the time that’s why the monitor beeps). This time, however, it
was telling me his oxygen was too low. In the split second between it beeping
and me looking at the monitor, his ox level had dipped eight points below his
acceptable threshold, and in the second I looked at it, dipped another ten
points. I’ve never moved so fast in my life, but I couldn’t wake him up and get
him breathing again. His father performed CPR while I called 911 (and gave MY
address to the 911 operator instead of their address, oops! My sister quickly corrected
me and I hurriedly gave the right info to the 911 operator.) Nico started
breathing again before the paramedics arrived (from when he stopped breathing
to when he started again was probably less than two full minutes, but it seemed
like an eternity and I’ve never been so terrified in my life). He has had
episodes like this before (which I was aware of), and since he was breathing
again and doing well, they didn’t transport him to the hospital. (The only thing the hospital could really do
is observe and then send them home, so there was really no point in going). He
slept soundly and well the rest of the night, but I certainly did not. I was
way too amped on adrenaline and I freely admit I was terrified it would happen again
that night. (I’m scheduled to take a child & infant CPR and First Aid certification
course so I’ll be better prepared if/when it happens again).
On another night, he wasn’t feverish or sick, but
for whatever reason his medications didn’t seem to do much to help with his
seizures, and he had seizures all night long. There isn’t much I, or anyone,
can do for him during his seizures other than make sure he’s ok and attempt to
soothe him. The only time I’ve ever known him to cry or fuss is when he is
having or is about to have a seizure. They are apparently extremely
uncomfortable and/or painful. When one of his seizures comes on, his heart rate
goes up, and his monitor beeps. And I know I mentioned it before, but believe
me when I say you aren’t going to be sleeping through those beeps. There is a
button that will silence the monitor for maybe 2 minutes, but then if his heart
rate is still up or his oxygen is still low, it will beep again.
I’ve learned a ton in the last four weeks. Here
are some of the things I’ve learned:
- That Nico hates
having the cannula in his nose.
- How to correctly
pronounce "cannula" (it's CAN-you-lah, not can-NOO-lah).
- To put the end
of the cannula near your lips to check if oxygen is flowing ok (the skin
on your lips is more sensitive than, say, the skin on your hands or arms).
- That petroleum
based lip balm (chapstick, carmax, & most standard lip balms) and
oxygen treatments DO NOT MIX. It can burn the lips of the person on
oxygen.
- To be sure the feeding
tube isn't clamped shut when giving Nico meds/food.
- To go to sleep
as soon as possible after you put Nico to bed (since he typically wakes
around 3am- on a normal night. On a bad night, you never know!!).
- On a good night,
Nico goes to bed at 10pm and sleeps till 5 or 6am (or more!).
- On a typical
night, Nico goes to bed at 10pm and wakes around 3am due to seizures
starting up again.
- On a bad night,
Nico won't sleep much at all due to seizures, or his heart rate will be
elevated due to illness and his pulse-ox monitor will be beeping every 2
minutes or so. All. Night. Long.
- How to settle
Nico in bed in such a way that his feeding, oxygen, and pulse ox
tubes/wires won't be in the way or tangled if I need to take him out of
his bed (especially if there is an emergency).
- How to
strategically place blankets and burp clothes so that if he throws up, it
will only hit the linens I have placed for that purpose, so I won't have
to change his pajamas and all his bed linens half a dozen times (or more) a
night when he is ill.
- To place very
lightweight blankets on him, otherwise he sweats up a storm and gets very
uncomfortable.
- How to suction
mucous- both the general procedure and the sterile procedure.
- To make sure all
his monitors are securely plugged in. If the plugs are loose, they run on
batteries for a while but when the batteries get low they start to beep annoyingly
and steadily. The first time it happened I couldn't figure out how to make
it stop (until my sister came to my rescue!).
- That Nico-smiles
are one the best thing in the world, hands down. Much of my “hanging out”
time spent with Nico is trying to get him to smile, because his smiles
just light up the room and make my heart happy.
I asked my sister for permission to write this, to
try and bring a little bit more understanding to what actually goes into Nico’s
care at night. I work during the day so I can’t offer a hands-on perspective of
what the days are like, but I know he has many doctor’s appointments, physical
and occupational therapy visits, exercises to be done at home, breathing
treatments, and more. I knew, more or less, what was going on, but it was all
in general terms. I don’t think I’d ever read anything very comprehensive where
someone shared, in detail, what goes into the daily care of a family member who
is unable to care for him or herself and may have additional medical
complications (whether it’s a child who has extensive special needs, an elderly
parent who is bed-bound, or anything in between).
And even now, I can’t say that I fully understand.
I’m only there three nights a week (and only for a few weeks), and on the other
nights I get to sleep in my own bed. It’s different when it’s all day, every
day, indefinitely. I really only have a glimpse, but I wanted to share it, in
the hopes that those who read it will have a greater understanding and
compassion for caregivers. My sister is luckier than many, to have in-home
nursing care provided, and to have family nearby who are willing and able to
help her when she needs it. I don’t mean that in a bragging way, either. The
help I have given is a pittance compared to what my mother does, and of course
what my sister and her husband do.
I’m still tired (last night was a rough night) J
so I can’t think of a great, moving, inspirational way to close this. I’d even
be satisfied with just a decent closing paragraph, but this will have to do. I
would just say to be kind, be compassionate, and whenever you can (and whenever
it is welcomed/appropriate), be of assistance.
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