Lights on?

[TEE]

We've always kept a light (not a night light) on in our daughter's room since coming home from the hospital. She is vented 24/7 and we basically want to see her and be able to see when we need to suction her....we would love to not have the light on and were wondering what everyone else does? I've tried a few night lights but they are too dim or our eyes are too old for them? So what do you do?

We've made progress during these months, from having a cot in her room to taking it out and moving back into our bedroom---we are right across the hall from her room and can see her from our bed in her crib...we have been taking driving trips with her during the day and today was the first time we've taken her into a business. We went to a local coffee shop and had coffee...this was the first time we've have been out together as a family since coming home last year, due to cold weather and just trying to adjust to all of the equipment---you can appreciate how nice this was! I'm slowly working towards driving with her by myself.

[Caleb'sMom]

that's so awesome you all went out to a coffee shop. i completely understand how meaningful that was- something people take for granted.

how do you wake up at night to know she needs suctioning?

we started out leaving a dim light on and still do. my son makes noise and makes the vent go off when he needs suctioing.

can you put her pulse ox so you can see it?

[Sweet Harrison's mommy]

I also insist on leaving a light on for my son as he sleeps (drives my husband crazy. haha). He is not vented, but I worry that he will wake up and cry and we won't know bc he doesn't sleep with a cap or PMV on...hence the light so that we can see if he is awake. What we've been doing lately is turning a lamp on and placing a blanket over top of the shade. It gives more light than a night light, but it isn't too bright as to keep him awake. it's been working like a charm

[JandD]

I use a blue light bulb with my babies. It's only 25 watts. Plenty of light to see by but not enough to annoy a sleeping baby. For Dovid's room, we had one of those lamps with 5 "heads" that were bendy. We would turn on two at night and bend them away from him which was enough to work with, keep nurses happy and not be annoying to him.

I would not recommend putting a blanket over a light bulb ever. The blanket can sag. I have been on 3 house fires (I was a firefighter) where the cause was cloth over a lamp.

[lauryns mum]

We have a really small lamp with a very low emitting bulb (from IKEA I think) - not enough to disturb her while sleeping and enough to see what you are doing. Seems to work with us!

[angelbaby]

we leave our hall light on, his room is right across from ours, the hall light works well for us

[TEE]

Our room is right across from her room and I can be in bed and see her in her crib. If it is my night or my husband's night to care for her, we take that side of the bed. She either coughs when she needs suctioning or the vent will alarm; she is also very vocal over the trach. We have finally gotten a passy muir but the pulm. said to wait until next week when we go for a bronc before trying it again. She couldn't breathe and her PIPs were way up while it was in line. She has a cuff that we inflate at night due to her leak but even with the cuff inflated she can make noise. The pulse ox that we have is one that will not stay on her nor does it alarm, that is what we were sent home with---which we use it basically to spot check her....crazy I know when I think about it but getting her home was an ordeal when it came to getting equipment. So the only alarms we have are the vent alarms, no other kind of monitor. As someone else said on you develop an ear for her that we get up if we hear a change in the vent or her....we miss sleep.....but we would really miss her if she weren't at home!

[Ainsley's Mom]

We use the pulse-ox light. It gives just enough light to see on the monitor. I also have a clamp on light on her IV pole. So if I need to suction I turn that on. She stirs, but if you need to see you need to see.

[kadiera]

we've used either a desk lamp or a small table lamp with a very low wattage bulb. Or...we've also left the closet light on (we have walk-in closets) and left the door open.

Once we really got comfortable with Alexander, we turned lights off when we have no nurse, and just turned something on if we needed to. He sleeps through anything though, so we could turn the overhead lights on once he was out for the night and he'd never notice.

Bethany's room sits better compared to hall lights, so we can just leave the door open if need be.

[SammyJo]

I sleep in the same room as Sam and use the closet light when necessary. We keep the air compressor in the closet to lessen the noise, the tubing keeps it open a couple of inches, which is perfect amount of room to allow light for suctioning. I don't leave it on all night, just as needed. I also use my iPad as light if I don't need to suction. I am sure you will eventually feel more comfortable without a light on overnight. What about a baby monitor so you can hear little movements or noises, things you can't hear across the hall? If Sam was a good sleeper a baby monitor would suffice, but she is not so I have temporarily traded my husband for the pulse-ox, which sits next to me so that I can quickly turn it off when it can't read due her foot position. The pulse-ox, such a love-hate relationship!

So glad you were able to venture out, what a great feeling!