You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Trach Questions
(c) 1998 Wide Smiles
This Document is from WideSmiles Website - www.widesmiles.org
Reprint in whole or in part, with out written permission from Wide Smiles is prohibited. Email: email@example.com
For those of you with trach babies:
I have lots of questions:
1. Did the doctors tell you not to take the baby anywhere except the Dr's. office because any sickness could put them in the hospital?
2. How did you handle sleeping arrangements since you can't hear them cry? We are not sleeping at the same time right now.
3. How long before they sleep more than 2-3 hours spurts? Taylor is eating about 2-1/2 oz minimum, but she still only sleeps 2 maybe 3 hours at a time at nite. How much does a normal baby eat at 3 months?
4. Did your baby force air past the trach to make a "wah" sound when they are really miffed?
5. How much did you use the humidifier and the artificial nose? Taylor hates both so much. She will work her chin under the artificial nose until it comes off.
That's all I can think of for now. I am so glad to have found CT. You guys are great. I have done so much research but none have been as helpful as all of you. It is great being a part of CT!
It's nice to share experiences with someone in the same boat!!!
Ivan's trach has not stopped us from getting out of the house. Although it has *slowed* us down quite a bit. I take him almost everywhere but try to avoid places with lots of children. Our ENT is really a great doc and assures us that we can't live in a bubble. So when I get the urge to get out of the house we do!! So far Ivan has not had any trouble from going out. But I'm sure there is a cold out there with his name on it!
We are lucky as far as nights go. We have nurses from 9pm to 5am. It's a little inconvenient having someone in your home every night, but it's worth the peace of mind knowing someone is watching Ivan 24/7.
Ivan has a button (G-Tube) so the feedings are not too hard. If he is asleep ie: the 1am feeding, we just "tube" him and let him sleep! Ivan is taking 110 c.c.s approx. 3 1/2 ounces per feeding. He has reflux so he should be getting more I think, but we fortify breast milk with formula and rice so he's getting enough calories.
As far as noise when he's miffed, and boy does he get miffed!! He sounds like he's lost his voice and is still screaming at the top of his lungs :) We joke about paying extra for the "quiet" option on our Baby!!!! He has not yet learned to push air around the trach, but does make some interesting mouth noises!! Clicks and pops and the like :)
We use the "nose" and Ivan doesn't seem to mind it, except for the fact that his double chin pushes it off continuously. And sometimes he can blow it clear off with a good sneeze!!
Does Taylor use the small nose or the T-filter? And does she take much from the bottle?
Ivan's awake and I've enough trouble typing 2 handed much less 1!!!!!
Belle, Ivan's mom
Hi. This is Margie M here - mom to Ryan N who was trached for 23 months. Hopefully I can try to answer your questions.
First we brought Ryan everywhere. We were a bit more cautious because of the trach but we were determined to live as normal lives as possible. When we went to the pediatricians office early on they used to put us in a room right away. Ryan was sick a lot his first year but it is hard to say where he picked up the illnesses.
The sleep thing. That is hard to say when does a "normal" three month old sleep. Depends. From your question I take it you are not getting any home nursing care? Ryan had nursing care at night through our insurance so that we could sleep. Check into programs ran by your state also. You may be able to get some help there.
As Taylor's airway gets larger and the trach stays the same size you will begin hearing more and more sounds come out. Early on the only time we heard anything from Ryan was when he was really mad which was very rare.
Finally the "nose" piece. I am familiar with two types neither ever seem to bother Ryan. We pretty much put the humidifier on during the night when he was sleeping and sometimes during naps if he was extremely dry. The rest of the time he wore the nose.
I understand all too well the questions and researching the trach. If you have anymore questions please e-mail me I would be glad to answer.
Bye for Now
I agree with Margie's common sense approach to the trach. I am an RRT and adopted a ventilator dependent child. We, too, were determined to live and to give our daughter as normal a life as possible. We opted not to have nursing care...Brenda was on a vent so it would alarm if it became disconnected. We turned down a lot of medical equipment that we felt was unnecessary (Pulse oximeter, EKG monitor and Apnea monitor) and we live a full life even going camping in a tent and swimming in the lake! We traveled to Disney World and even went shopping in Neuve Laredo, Mexico (talk about germs!).
They really do learn how to make noise around the trach and more as the grow. I would recommend using the humidifier at night and to try to keep the artificial nose on as much as possible. Since Taylor doesn't like the nose you can try this to keep it on. Thread a thin rubber band through the hole where you thread the tie and loop it through itself then loop it over the "nose". If the rubber band is to long tie a knot in the loop and give yourself loop to lift it on and off.
I would be happy answer any questions you have regarding the trach and any other aspect of respiratory care.
Marsha, a few answers to your questions,
We were told that Jeremy would be vulnerable to infection. It was left to use how we would deal with this. We washed our hands a lot. We dusted and vacuumed Jeremy's room a lot. We kept his equipment and humidifier quite clean. We supplied our nurses with gloves and masks. We avoided people that had colds. Still, we visited lots of people, and we went everywhere we wanted to go. We just had to do it with more equipment. Our biggest problem in visiting wasn't other peoples kids and colds, it was other people's kids getting hold of Jeremy's trach and giving it a yank! He didn't much care for that, as you can imagine.
For sleep, you should be getting nursing care. I don't understand why you are not, but I'd look into that. You might want to try putting her in a bassinet or basket beside your bed. Someone suggested to us once to put bells and Jeremy's ankles. I thought they were weird, but they pointed out that a baby that can't breath doesn't exactly lie still.
Anyway, the biggest concern for nighttime is Taylor drying out and getting plugged up. We initially had Jeremy in our living room, in a bassinet on top of a change table. He had his table full of stuff beside it, and the humidifier sat just below that. When we moved into our house two months later, we switched him to his crib, but because he was in his own room, it was easier to keep the air nice and moist. I know they say not to use hot mist humidifiers, because of the infectious risk, but if you keep them clean, and if you keep Taylor's mouth, nose and trach lightly covered to keep out cold air in winter, she will be okay. We didn't use thermavents with Jeremy because we found that he got too moist and needed more suctioning throughout the night. We did use them when we traveled, or if we were staying overnight someplace that didn't have good humidity or a humidifier.
By the way, I don't know how you pack when you go out, or if you go out. Just as a suggestion, we found a regular diaper bag to be too cumbersome. They keep sliding off of your shoulder, especially if you are carrying a baby in a carseat in one hand and a suction machine in the other. We use a backpack. All the usual baby paraphernalia goes in the main part, along with extra catheters, bibs and T-shirts (you'll find you need more bibs than most babies). In the front pocket we kept a bottle of saline, and a regular sized box of wet wipes (empty) which we used as Jeremy's kit. We kept his spare trach in it, as well as syringes of saline for instilling, spare trach ties, scissors, tubes of polysporin or nilstat cream for around the trach site if necessary, ear drops if necessary and Q-tips.
Talk to your doctor about how much Taylor should eat. There is a formula for gauging how much they weigh to how much they should eat to gain weight. Jeremy was 8 lbs 9 oz at birth, and at three months he was drinking 3 ounces every three hours. That is, sleeping or awake. He used an NG tube too, so we could feed him where ever we went, even in the car. We used a kangaroo bag system, and we would stick the top hook in the car window if we were traveling, or if we were at someone's house, we could hang the bag just about anywhere with bungee cords (two hooks).
Sleep - well that was definitely an issue. Our nurses got bored. After they had cleaned equipment or made saline (some even cleaned my house and folded my laundry) they had nothing to do to keep themselves awake. When we were in the apartment, Jeremy slept in the living room, so they could watch him and TV too. Once we moved into the house, the TV went into the basement, and they couldn't really watch it anymore. If Jeremy woke up at night, wet or hungry, they played with him for an hour or two. With the help of our Homecare nursing advisor, we put a stop to that. By one year, Jeremy was sleeping through the night. I don't know what the rule of thumb is for most babies, because it varies. Usually, I think, by about three months, they are sleeping through, say about six to eight hours. Again, talk to your doctor.
Hope that helped. Sorry it was so long again.
Cleft Links | Wide Smiles | Photo Gallery