For those without night nurses

[sofiasmom]

How do you do it? We just had to let go of one nurse do to unprofessionalism. Now that Sofia is older and off the vent, I was contemplating sleeping next to her if we have to cover a night. If you don't have night nursing, what's your process? Do you stay up or snooze next to your child and wait for any alarms? So far, our comfort level has only been to stay up - usually my husband and I split the shifts. But if we have to do more than one night in a row it's so tough. Thanks for any insight into your amazing abilities.

[Niff]

We have an air mattress that we put in Mackenzie's room to sleep on when we don't have a night nurse. I sleep through alarms unless they're right in my ear. It works for us.

[JWorthington]

We had another bed in Sam's room for a while and took shifts, one night on, one night off. as we got more comfortable, we let him sleep alone and just used the baby monitor. we never had night nursing.

[JessicaLalonde]

We dont have nursing or a pulse-ox... At first David slept in his own room and we just used the Baby Monitor to hear him and now we have his crib in our room. Unfortunately (for Dad) Mom and David have gotten attached at the hip and he now sleeps in bed with us :)

[Jacob's Mom]

We have never had night nursing. In the beginning (first year or so), Jacob slept next to us in a cradle or crib. At 11 months, he was put on a vent at night and that actually made me feel much better. We also did not have a pulse-ox the first year. Since then he has slept in his own room and we use a baby monitor. I will say that I am wide awake with the slightest movement or sound from him. Also, Jacob is relatively stable (as stable as a kid on a vent can be) and rarely ever needs attention once he's asleep.

[rosi's mom]

We have Rosi's bed in our room. It's practically right next to our bed (I can touch it with my hand). I actually hear her as soon as she needs to be suctioned. I used to hear it upstairs when she was downstairs with a nurse so I wasn't too worried. We have an A& B monitor, but it alarms all the time for no reason. Most often for Apnea as we stand and watch her breathe. It's horrible. So we don't use it. I used to have to stay awake, but then I would doze and still hear her so I started letting myself doze off and then I started just sleeping and seeing what would happen. Since I hear her I just go to sleep. It took some getting used to though.

[drct1245]

I think it really depends upon your child, how stable they are, how much sux is required, etc. Even when Ayden was on the vent, when he came home he was stable enough and hardly ever required night time sux AND he slept through the night. So after about 3 months of sleeping in the same room with him, we moved into the next room and then eventually back in the same bed. My hubby and I alternated nights, so one would get 1 full night sleep - plus our room is just across the hall too. We had a video monitor and that amplifies the sound so that we can even hear him breath. :)

That was our solution. good luck!

[llwilliams8]

We only have night nursing 4 nights a week. We have a video baby monitor and leave our doors open on the nights when we do not have nursing and turn her pulse ox up all the way. I'm a light sleeper so I hear everything and even if water gets stuff in her tubing I will wake up to the sound of it cycling differently. Autumn rarely needs suctioning at night so she pretty much sleeps all night and then if she wakes up and coughs or anything she will set off her pulse ox for me. I actually get more rest without night nursing because I can hear them messing with her at night and she wakes up early with nurses but will sleep an extra hour when they are not here.

[Momoffive]

We've never had night nursing (and I'm a single parent) - when Robin was younger (about 2-4) I slept on an air bed in his room, then was comfortable moving out and am always able to wake up to alarms - sometimes even before the alarm I hear something that doesn't sound right and I'm up. He needed more suctioning and had a not-as-good vent when he was younger so it was nice to be right there. Now, he usually sleeps all night unless he is sick. You'll find what works for you - staying up too many nights is pretty brutal on eveyone!

[ericnrosesmom]

We never had night nurses either. Eric came home at 16 months old and was already sleeping through the night. He was pretty stable and very seldom needed nighttime suction unless he was sick. He's always slept in his own room with a baby monitor.

[Baby1107]

We've never had night nursing either. When we lived in TX he had his own room across the hall with a baby monitor so we could hear alarms etc. Now that we live in Ca we share a room and use a video monitor so the alarms are no issue. Pretty much like Dawn said he requires only a little suction and sleeps thru the night (unless sick) so this works for us. Austin has also never been on a vent, just O2 with Pulse Ox, humidity etc....so that might be why I've never felt I had to be right in the same room when we lived in TX. Also I do doze/sleep and wait for alarms to wake me...I would not be able to function otherwise.

[Livi's_mama]

We've never had night nursing either.

Olivia has slept in a crib, in our room since she came home on the vent. (vent dependent for 3 yrs)

I wake for the slightest movement too, since I am a very light sleeper.

I'm a SAHM so I wake up if she needs something, but she's a pretty good sleeper for the most part.

Sometimes after being in the hosp we have to get her back on track but it doesn't take too long.


Sleeping on an air mattress would be the death of me! :eek:

[saywhatyouwill]

emily was always in her own room and slept with an apnoea monitor. we turned the baby monitor up really loud. there was never an issue with us waking when she needed suction. the trach was gone before she was 3 so we never faced the problem of her sleeping in a bed (rather than a cot).

[Niff]

Trish - The air mattress is not too bad... until you have to start getting up and down all night. That's when I'd love to have the room for a twin bed in her room.

[Ann]

I could sleep on a concrete floor and be fine because I'm so darn tired all the time. :D I sleep in a different room from Jack and rely on a monitor if I'm sleeping upstairs, or just rely on my hearing when I sleep on the couch in the family room just outside of Jack's room. I haven't missed an alarm yet (they are few and far between unless Jack is sick.)

[bryantem]

We have never had any nursing. At first Addy's crib was in our room. When she was 6 months old, she was moved to her own room. She was on a pulse-ox and we have a baby monitor.

[Jordansmommy]

We went without a night nurse for a few months because we had to let a nurse go for sleeping, Now we have two nights that we stay up with him. We usually take turns and my husband doesnt sleep at all he finds things to do to stay busy like clean which is good for me! I stay up most of the time and I will go to sleep for a while but its not a good sleep I can still hear him breathing and I can tell by listening to him breathing if hes crying or if hes sleeping and can hear all alarms if any go off. At first I was afraid to fall asleep and then I started off setting my alarm on my phone for every hour to make sure everything was all good. Try a few things and see what works best for you!

[kshell]

We have Natalie downstairs in "formal living room" (makes me laugh to say that). Her room upstairs is too small for the stuff she initially came home with. We have a couch in that room and we sleep on it when we don't have night nursing (its more frequent than ever now :(

Having the cough in her room is one of the reasons we haven't moved her upstairs yet b\c it makes it easier when we don't have a nurse. Nats is also hooked up to a pulse ox when sleeping but I don't trust myself if I'm not in the room with her.

[Livi's_mama]

Trish - The air mattress is not too bad... until you have to start getting up and down all night. That's when I'd love to have the room for a twin bed in her room.

I bought an air mattress and used it for our last inpatient chemo wknd. OMGoodness, I could not do that very often! :eek:

Since I don't sleep much in the hospital it's ok, but never at home, will it be used. :down: :down: :down:

I feel for ya on the nights you have to use it! :hug:

[Kamilah's Mommy]

We didn't have night nursing for a few months, and at first, I tried to stay up at night and sleep during the day when my husband came home from work. But that wasn't really working for me because I have never been able to sleep during the day, I get headaches. So my husband and I just slept next to my daughters crib and having the alarms next to our ear and them being so loud, we woke up (or jumped) each time.
But now we have two night nurses that cover our entire week, so we do sleep a little better but I still wake up every time the alarms go off.

[jamie]

Evan has always shared a room with his brother, but when he came home from the hospital I gave him my room for privacy. However that left me without a room. So I sleep on the floor in Evsn's room. That way I CAN sleep in between alarms.

[haynjaymom]

We haven't ever had night nursing either. When Jaden first came home he needed a lot of suctioning so we started off by sleeping on a cot in his room. I would sleep in there until 2 or 3 in the morning when his dad got home from work and then he would sleep in there until the nurse came in at 7 a.m. We eventually got tired of the cot and got a futon, which seemed great for a while, but also got pretty uncomfortable so we decided to just put a twin bed in his room and kept the same routine until he was a little over 3. At that point we felt that we had to move him out of the crib to his own bed. He had a pulse ox, so we would just turn a baby monitor up really loud and never had any problem hearing it go off. Now at almost 9 years old he doesn't really want to wear the pulse ox. If he needs suctioned in the middle of the night he will just come and get us, but in the last couple of years I think he has needed suctioned in the middle of the night maybe twice.

[MRSJOH]

we didn't have night nursing, Jasper's crib was right next to us, he had a pulsox too. Although if he was a healthy child I would have kept him with me too, just us though, everyone finds what works best for them.
Jasper would get up about 4 or 5 in the morning and want to come to bed with us anyways :)

[sawyersmama]

Wow! I am amazed at the amount of parents that sleep in seperate rooms from their trached babies at night! Our hospital (Sick Kids) has made it VERY clear to me that Sawyer is to have an "awake and alert caregiver at all times" Clearly as a single mom with only 40 hours a week nursing (5 nights 11pm-7am) this isn't going to work for me! On my up nights I put S in my bed and go to sleep at 3am after his last med is given, and sleep with him until he wakes up at 730am.
I fully agree that it is a comfort level thing!

[rosi's mom]

My hospital wouldn't let us bring Rosi home without 7 nights a week covered for the vary same reasons. Someone was to be awake in our house at all times. But after awhile, with 2 older kids and enough call offs I just couldn't stay awake all day, all night and all day again. So I gave up. Now we've gotten rid of our night nurses pretty much because it was worse with them here. I'm not sure what the ENT doctor would say if he knew, but we don't have much longer for the trach so we're not worrying too much.

[Melisande]

Wow! I am amazed at the amount of parents that sleep in seperate rooms from their trached babies at night! Our hospital (Sick Kids) has made it VERY clear to me that Sawyer is to have an "awake and alert caregiver at all times" Clearly as a single mom with only 40 hours a week nursing (5 nights 11pm-7am) this isn't going to work for me! On my up nights I put S in my bed and go to sleep at 3am after his last med is given, and sleep with him until he wakes up at 730am.
I fully agree that it is a comfort level thing!

Kayla, yes I agree, we were told to have an awake caregiver at all times and I can say for the first few years, that was totally true for us. Donovan was a restless sleeper and pulled his vent out and had a lot of apnea, especially the first year or two. We also monitored his CO2 every two hours. As he got older it got more manageable. I think it depends on the kid and if they're sick or not sick. Little guys can definitely need a lot. I am a light sleeper. My DH could actually get sleep in between alarms, but I never did. :rolleyes:

[Niff]

Wow! I am amazed at the amount of parents that sleep in seperate rooms from their trached babies at night! Our hospital (Sick Kids) has made it VERY clear to me that Sawyer is to have an "awake and alert caregiver at all times" Clearly as a single mom with only 40 hours a week nursing (5 nights 11pm-7am) this isn't going to work for me! On my up nights I put S in my bed and go to sleep at 3am after his last med is given, and sleep with him until he wakes up at 730am.
I fully agree that it is a comfort level thing!

Aw... c'mon Kayla... you KNOW they like to scare you when you first talk about bringing a trached kiddo home. You can't sleep, you can't leave the room, drive by yourself, give them a tub bath, etc etc etc. In an ideal world we'd all be able to stay awake for weeks on end sans sleep, and always have an extra person around... but that doesn't happen. I think the important thing is to keep in mind your child's condition/stability level. It took us over a year to feel comfortable sleeping without a night nurse. Mackenzie was on a vent and frequently pulled her trach just enough to block her entire airway. As for solo-driving, she just required way too much suctioning for it to be possible. Now that she's a bit older and much more stable, we're able to get away with things that we couldn't before. Had you asked me 6 months ago if I'd feel comfortable taking a shower with just me and Mackenzie in the house, I'd say HECK NO! Now she's content to play in the living room while Mommy gets squeaky clean. As long as I can call out to her and her respond, then she's still breathing and we're good. :) So overall, it boils down to comfort, stability, and necessity.

PS - I know I told you this on FB, but Sawyer is so handsome!

[sawyersmama]

Aw... c'mon Kayla... you KNOW they like to scare you when you first talk about bringing a trached kiddo home. You can't sleep, you can't leave the room, drive by yourself, give them a tub bath, etc etc etc. In an ideal world we'd all be able to stay awake for weeks on end sans sleep, and always have an extra person around... but that doesn't happen. I think the important thing is to keep in mind your child's condition/stability level.


Oh I know all about them liking to scare! LOL I absolutely believe it depends on the babes stability and your comfort. I think the only reason that I don't sleep in a seperate room from Sawyer is cause I'm scared somebodies going to find out lol We are going to family court and his dad actually told his lawyer and a children's aid worker that Sawyer literally needs to have eyes on him every second of every minute of every day.

Driving too huh, hmm. S still needs an absurd amount of suctioning though its better then it was, but he's still in a rear facing carseat ... but that is something I would consider when he's bigger absolutely ... my little bro does make a good chauffeur though! LOL

[Madeline and Molly's Mom]

We have our *very* first night nurse tonight... I'll let you know how it turns out. I'm cautiously *un*optimistic that I'll be getting any sleep whatsoever anyhow.

[bryantem]

I drove alone with Addy from the very beginning. I didn't have much of a choice. My husband worked 45 minutes away 5 days a week and we had no nursing. None of my friends live close, so I had to make due with what I had. The NICU never told me to make sure someone was awake at all times, nor did they tell me not to drive alone. For the most part, Addy has always been pretty stable with her trach. She had an apneic episode once in the car in the very beginning, but was on a monitor at the time.

[Ainsley's Mom]

We moved Ainsley into an alcove in our bedroom that is closed off by curtains. She sleeps with a pulse-ox on but it doesn't ususally alarm but we hear if she needs suctioning. It's like having a newborn. Some nights she sleeps through the night but often we get up a few times. We had night nurses in the beginning when she needed it more. It's been a few years like this and it works for us. When she naps we have a video baby monitor on her as well as the pulse-ox.

[Wyatt's mom]

We have had a night nurse from day one. Its a great comfort for us. We have been very blessed to have 5 great nurses that rarely call in. Usually when they do its because they are sick or bad weather. Sorry to brag! :blush:
Now on the nights that they do have to cancel we have the baby monitor on and pulse ox. He usually doesn't need suctioning its more he's all over his crib and the pulse ox goes off then. My biggest concern is he pulls out trach and getting entangled in the wires and tubing.

[Peyton's Parents]

It's very easy for hospitals to say that you have to have an awake caregiver at all times but the reality is that in many states families with kids with trachs can't get the nursing they need - it's either not covered by private insurance and/or there is a waiting list for the Medicaid waiver that will cover it. We lucked out in California and Peyton came home with nursing. We got on the waiting list in Utah for nursing hoping to move back to be close to family some day as soon as she came home. Almost three years later we finally get back to Utah - and we are still on the waiting list! So we have no night nursing at this point and have very little hope to get off the waiting list anytime soon. Although there are a few waiver programs she might qualify for, you can only be on one waiting list at a time!

[Peyton's Parents]

I should probably clarify my previous post - because we are on the waiting list in Utah - we have no nursing at all. Since no daycare will take Peyton with her medical issues we had a family member quit their job and we pay her to take care of Peyton.

[Barbara]

[QUOTE=sofiasmom;220860]How do you do it? We just had to let go of one nurse do to unprofessionalism. Now that Sofia is older and off the vent, I was contemplating sleeping next to her if we have to cover a night.

Hi Sofia. We have a night nurse 4 nights a week. F-Sun night I bring Sydney's vent/humidifier in our room and we sleep with her in the middle (we have a king bed). I suction before we go to sleep (usually about 11) and unless she needs it, I wait until morning to suction again. I keep everything I need on the nightstand and on a rolling cart next to my bed with a flashlight, etc. so when I do have to get up it makes it super easy. I do sleep, I suppose it depends on the stability of your child. WIth her right next to us we can obviously hear everything. And if the vent does go off I can just press the button by my head (on the nightstand - lol). In other words, I trust that Sydney is going to be fine so I am comfortable falling asleep. For me it's impossible to stay up all night, which we did in the beginning for a week and I was a mess. Good luck!

[TaraB]

Hi!
Aside from home health nurse visits, Logan has NEVER had in home nursing. After his trach, we tried for 2 months to get coverage, and due to nursing shortages, no takers could be found. So, we took him home. Andy has him on his days off; my marvelous in-laws have him during the school year for three days. I have him every night--that is to say, I get up with him for suctioning and if his pulse-ox goes off. I sleep with a baby monitor right by my head and with our bedroom door open--we are right across from Logan's room. I am an extremely light sleeper, thank goodness...
If we are in a dire emergency we can admit him to our Peds unit as a Kid's Care charge...we just pay them daycare as we would anywhere else...however they only take him if they have space, it's not cold/flu season, no RSV/H1N1...completely understandable.