The thought of your child having a trach is terrifying. When we were first told Noah was going to have a trach, we were horrified and scared. The trach looked like some crazy torture device. We had so many questions about trachs and trach care. Once he had the surgery and we saw his little face for the first time not covered with tape, we knew we had made the best decision for him. He was so much more comfortable. Upon learning that your child will have one, many thoughts run through your head. Will my child be able to talk, eat, swim, bathe, yell, etc. You will also wonder how on earth you raise a child with a trach. The answer is that you will raise your child just like any other child without a trach.
I have found over the years that
trach care varies from person to person, state to state and country to
country. So, for this blog entry I will be speaking from our experience
and from our care as we were taught at our local Children's Hospital of
Alabama. Fortunately, we had an excellent home vent nurse who made sure we were thoroughly trained in trachs and trach care. Depending on where you live, your trach care routine may be
different. So I have decided to share our experiences with trachs and try to give
some tips for new trach moms. This is in no way expected to take the
place of your doctor's/nurse's orders that they give you for your own
Trach Surgery--Trach surgery is a relatively simple
procedure that does not take long (about 30 minutes). Noah received his
trach when he was a little over a month old. His recovery was remarkably quick and about a week after getting his trach, we began our trach training.
Trach brands--There are several different kinds of trachs. Noah started out with a neonatal Shiley. He had some issues with his HME popping off and having redness around the trach site. So, we switched to a Bivona flex, which we have been using ever since then. We love it! The flex hangs down some so it is easier to clean his neck. He has no issues with redness (except for when he is sick) and the HME/cap stays on without popping off. He also seems to like the fact that it is not bunched up under his neck like the Shiley was previously.
Trach Ties--There are also many different kinds of trach ties. We have tried many brands but our preferred brand is the Marpac. We cut to fit and it comes in two pieces that velcro together. For daily cleaning, we use gauze, a soap free cleanser (Cetaphyl or Physoderm), water and Nystatin powder. First we use the soap free cleanser and wipe around his neck and under the flanges. Then we wipe with a wet gauze to get the soap off. We then wipe with a dry gauze and apply the nystatin powder all around the trach site and under the flanges, being careful not to get the powder in the stoma. We then loop the new ties through the trach holes and fasten. Its a very simple procedure that takes less than 5 minutes. The ties are changed daily.
Suctioning the trach--Now that he is wearing a cap on the trach, we do not have to suction as much. When we do suction, I use sterile gloves and a new sterile catheter every time. We use it once and throw away. The size of the suction catheter depends on the size of the trach. We use an 8 French and suction to the number 10 line.
Changing the trach--When we change the trach, we make sure to clean the area like normal. I suction him. Then I use a lubricating jelly that I place on the trach. We then take the old trach out and insert the new. He coughs a little when we insert the new trach. The trach is changed once a week.
Sterilizing trachs--We only receive 2 trachs a month so I have to sterilize and reuse, which I am not fond of but insurance will only allow 2. So to sterilize, I wash the trach and oberator with soap and water. I then use a pyrex measuring cup and boil water in the microwave. After removing the measuring cup from the microwave, I drop the trachs and oberators in the boiled water. I cover it with a paper towel and let the water cool. Once cool, I remove the trachs and place on a towel to dry. I cover the trachs while they are drying. After being thoroughly dried, I place each trach in its own sealed lunch baggie. So far, he has had no infections and I have been using this method for 3 years now.
Special clothing for trach kids--Noah does not wear any special clothing because of his trach. I do not usually put him in turtlenecks because he's not fond of them but if I do, I make sure the trach is not covered by the neck. We even figured out a way for him to wear a tie. I just make sure I can easily get to the ties and that the trach itself is not covered.
Covering the trach--We always make sure to keep the trach either capped or use an HME.
Trach Devices-- We always keep the trach covered. At first, we used the HME's. This device does the same thing that a nose does. It heats, moisturizes and filters the air. When wearing this, Noah needs suctioning several times. The PMV (passey muir valve) is used for speaking. Air enters the PMV but cannot escape, making the wearer breathe out of their nose. Noah hated his PMV. It took him 2 years to tolerate it! We did several bronchs to make sure there was no physical reason why he wouldn't tolerate the PMV. When he finally began to wear it, he was 2 years old. The only problem I had with the PMV was that it dried him out very badly. I had to remove it for awhile each day because he was in danger of getting a plugged trach. Once he tolerated the PMV, we switched to a cap. We love the cap! It looks like a larger version of a toothpaste cap and works wonderfully well. The cap completely closes the trach off and he breathes normally through his nose. Once he began wearing his cap, his speech improved greatly.
Eating with a trach--Noah eats normally with his trach. He did have some aspiration issues, causing us to have to thicken his liquids with rice cereal for several years. I would highly recommend getting swallow studies done periodically to check for aspiration. When he was a baby, I used a cloth bib to cover the trach while he ate. Now, I just make sure he has his cap on the end and he eats without a bib.
Water play with a trach--We are very careful with him around water. Noah bathes with no special equipment. I just make sure he is capped or wearing his HME. He does swim also. I keep his head above water and make sure the suction machine is close by in case I have to suction him quickly. We go to the beach every year and I always make sure to take the suction machine.
Trachs on the go--We always have an emergency go bag with us at all times when leaving the house. The go bag contains extra trachs (his size and one size below), trach ties, gauze, scissors, saline bullets, trach lubricant, sterile gloves, an ambu bag, stethescope, saline bullets and hand sanitizer. I also have a few extra suction catheters in there. Currenly we use a large backpack to hold everything but I am looking for a somewhat smaller backpack that's easier to carry.
Travelling with the trach-- Noah has 3 suitcases when we travel-one for clothes, one for ventilator supplies and one for trach supplies. There are a few ways to keep track of the supplies. One is that you can just go ahead and create little trach bags. Use a baggie and put all of the stuff needed for one day of trach care in there. If you are gone for more than one day, have a bag for each day. Then, all you have to do when doing trach care is grab the bag. Another thing you could do is to create a master list of all the supplies needed and keep it in the suitcase. Check off each item as you place it in the suitcase. During volleyball season, we went out of town several times. I had extra supplies so I just packed those and left the suitcase packed all season, making sure to replenish the supplies I used during the trip. It saved me a lot of work. Once the season was over, I unpacked the suitcase. I always take more supplies than we need, just to be safe.
These are just a few tips and ideas that work for us. Having a trach is just a little more work but really no big deal.