Carla's Tips

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Pulling trach tube out!

Someone asked if there was any way he could pull the trach out at night. This is not likely if the trach ties are applied properly. The trach is held in place with trach ties which are simply white cotton twill tape similar to a shoestring. It comes in white or other colors. Some kids use colorful shoestrings with patterns to be a little more "cool." The ties are held in place with a tight knot. It has to be cut off, not untied. As long as the knot is tied tightly it will stay secure. We didn't check the knot close enough 2 or 3 times in the beginning and the knot worked it's way loose, but we caught it in time. Once that happens to you a couple of times it will never happen again because you check and doublecheck the knot.

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Rounded tip scissors

There are some things I wish we had known before the trach, that we could have done to prepare ourselves. The professionals don't always think to tell you ahead of time, or there may not be time. You will need several pairs of scissors. The type the nurses use with the round tip. Not children's scissors. They told us to go to Target etc. but they don't have that kind. We found ours at the medical bookstore close to the hospital. Call around or ask the nurses where they got theirs. Don't wast time and energy at Kmart. They cost around $6.00. You will need a pair with each of your spare trachs. We kept a complete setup in the diaper bag, the suction machine bag, at his grandmother's house, by the diaper changing table and in a drawer by his crib. It is so important to have those scissors since the only way to get the trach off in an emergency is to cut it off.

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What to do with all that stuff!

You will have so much "stuff" when you come home from the hospital, and you need a place to put it and keep it organized. I felt so disorganized the first night back, on top of being very, very tired from lack of sleep. I couldn't find anything and nothing had a place. The first thing I did the next morning was go out and buy an Elfa wire basket unit with a laminated top to put the catherers, oxygen tube spare parts, air compressor spare parts, suction machine parts and all the other miscellaneous things you need to have extras of. You need to have it organized so you can put your hands on it quickly. It was the best money I ever spent, and I wish I had known to have it ahead of time. Mine is 24" wide with 5 drawers, 2 shallow and 3 deep.

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Passy-Muir speaker valves

The Passy-Muir speaking valve is a one way valve that goes on over the trach and allows the child to breathe in through the trach, but they have to breathe out through their mouth or nose. It allows them to talk or vocalize around the trach. If this valve is an option for your child, push to get this as soon as possible. Our doctor made us wait until Max was 18 months old. But he did great, and can make cooing sounds out of it and sometimes a pretty loud cry. We've become so used to our quiet child that we aren't used to hearing some of the sounds that come out of him now! But it's sweet music to our ears!

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Bathing with tracheostomy

My other big concern was how to give him a bath without getting water in the trach. Fortunately he is still small enough to give a bath in the sink, so it's a little easier to control. Once he got a Passy-Muir valve it was easier to control the water. I put the trach collar (that you put on at night for the cool mist) on during bath time and that helps divert the water. You will always have the suction machine close by, and just suction it out when he starts coughing. It wasn't as easy as the nurses made it sound, but not impossible either.

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What clothes can he wear?

Another concern was what kinds of clothes he could wear. The nurses just kind of blew that one off and said he could wear anything. Open collar shirts were the best at first because he wore a handkerchief around his neck (I've discovered not all professionals recommend a handkerchief, but we felt it protected him more, and made him less open and vulnerable and it was less messy if he coughed into the handkerchief and not his shirt). T-shirts were ok after we got used to it, if they were loose.

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Air compressor noise

The other thing we weren't prepared for was the noise from the air compressor (that makes the cool mist that blows through the trach when sleeping). Max's crib is in our room and I keep the monitor right next to my head. That way I don't have to put my glasses on to see the numbers, and I don't have to get up every time the monitor goes off. We can hear him when he needs to be suctioned. The first night was awful! The compressor was so loud! We made a 4 sided box out of rigid insulation board, the kind with the silver backing; and took the eggcrate foam mattress pad from the hospital and secured it inside the box to serve as a way to muffle the noise. Much like the old printer cabinets that muffled to printer noise. We also had to fold pieces of paper up to stick in some of the "cracks" to keep it from rattling. Last, we set the compressor on a towel to help absorb the noise and also protect the floor from water.
Note: Be sure that compressor gets enough air circulation so that it doesn't overheat. Check with your equipment supply company before making any modifications to equipment.

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O2 use at home

We also have oxygen at home that's used when he has a cold, etc. We use an infant nasal canula around his neck and it his trach for a more direct application. We found that we were using a lot less oxygen this way instead of mixing it with the cool mist. (Note: make sure the doctor knows the amount and route of delivery of O2, ei: nasal canula or trach mask.) We were having to refill the tanks a lot more often when we were mixing it. If you need the oxygen a lot, check into a concentractor that produces it's own oxygen. It's usually less expensive than refilling tanks every week. No one told us about this option the first year, so we wasted a lot of money!

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Sleepless nights

We were up 16 times the first night home from the hospital, but that got better with time. I guess it took 2 or 3 weeks before we were up only 4 or 5 times. Now I wake up once or twice a night automatically to just look at the monitor and listen. He usually sleeps through the night unless he's sick. But I keep telling myself that there are Moms who are up that often with typical kids too.

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