preventive measures
First, we try to minimize any respiratory complications by keeping DJ's environment as free of dust and other irritants as possible. We are especially careful because we have two cats. We run an air ionizer with a HEPA filter for a couple of hours every morning.
Second, we keep in mind that one of the main factors causing respiratory problems is inactivity. Frequent position changes also work to loosen any mucous that settles in DJ's lungs. We keep him upright for most of the day to help drain some of the secretions, alternating between being propped up on the sofa, in a stroller, or sitting on someone's lap. We exercise his legs and arms every time we lay him down to change his diaper.
Third, we help DJ to exercise his swallowing reflex and soothe his teeth by letting him chew on something moist, like a wet washcloth. We also brush his gums lightly with water on a baby toothbrush. If his mouth feels moist he tends to produce less secretions.
Fourth, humidity loosens congestion. We run a cool mist vaporizer while he sleeps at night to increase the amount of moisture in the air. The humidity helps to break up congestion.
Fifth, DJ sleeps on a wedge-shaped foam pillow at night when he has a cold. Elevating his head really helps to drain excess mucous and secretions.
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DJ started taking Robinul (glycopyrrolate) when he was 3 1/2 years old. Robinul is an anticholinergic. We use it to control excessive watering of the mouth and to aid in drying excess secretions.
At first, DJ took a small dose of Robinul at night to help him sleep more comfortably - half of a 1 mg. tablet. After six months, we increased the dosage to 2 tablets, one tablet in the morning when he first woke up and one tablet before bedtime.
By the time DJ was 4 1/2 years old, we switched to the liquid form of Robinul. He receives 5 cc of Robinul via syringe into his NG tube three times a day, about every eight hours. This dose thickens the mucous enough to enable him to cough it out.
Some considerations: Robinul is quite effective in helping DJ to breathe clearly. However, there are two side effects. First, DJ's constipation has returned full force. The Robinul dries out the stool so it is like little pebbles. To help soften the stool, DJ gets an extra 8 to 12 ounces of water every day. We also give him 2 to 3 ounces of prune juice mixed with water twice a week. Second, the Robinul works by thickening the mucous in his throat. Although DJ has a good coughing reflex, sometimes the mucous becomes so thick that he can choke on it. We must use the suction machine to aid him.
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excess secretions
DJ tends to accumulate phlegm in his upper airway. These methods below help to loosen and drain the excess mucous.
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| 1. Chest Physical Therapy
We use chest PT to loosen the phlegm a couple of times during the day. We percuss DJ's chest by hand - your hand looks like it is holding a cup of water and you tap on the back, chest and ribs. We also use vibration through a small, handheld massager.
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| 2. Postural drainage
In the morning, we place DJ on his stomach on a wedge pillow or a couple of pillows for a few minutes. Since his feet are slightly higher than his head, the secretions just drain out.
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| 3. Bulb Syringe
DJ has a strong coughing reflex so he does not need that much help. When we need to clear excess secretions from his mouth, we usually use a bulb syringe.
The bulb syringe is also good for a stuffy nose. You can put a couple of a saline drops in the nostril to loosen the dried mucous, then suction gently with the bulb syringe to draw the it out.
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| 4. Suction machine
We have a portable suction machine at home. DJ does not require much suctioning when he is not sick, about every 6 hours or so. When he has a bad cold, he can need the suction machine every five minutes. We use a suction catheter to get rid of the thicker mucous from DJ's mouth and the back of his throat (he prefers a 10 Fr catheter rather than a Yankeur). We keep a cup of water to flush out the tubing after we use it each time.
The portable suction machine runs on a battery that can last up to four hours. At home, we have plugged into an electrical socket. The machine also has an adaptor so we can recharge it in the car.
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We found that a Nasal Aspirator connected to the suction machine works well to remove the mucous from his nose. It doesn't go very deeply into his nose and is more comfortable for him than using a standard suction catheter up his nose.
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Cleaning tips for the suction machine: We empty out the collection container each night and clean it with warm soapy water. We disinfect it more thoroughly once a week with a mixture of three parts hot water to one part white vinegar. When DJ is sick, we clean it daily with this vinegar and water mixture.
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| 5. Nebulizer
When DJ is really sick, or has a sinus infection, the mucous becomes quite thick. On these occasions, he will get a saline mist through a nebulizer to help loosen the thick mucous.
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