(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.
|Pulse oxygen monitor to the left.|
Feeding station to the right.
|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.
|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!)
|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.