The daily caloric needs of someone with Cystic Fibrosis is typically at least 150% of that of a person without CF. Being able to consume massive calories in a day can be a cumbersome burden and difficult to maintain. For the sake of long-term lung health, there’s recently been a huge push in the CF world to attain and maintain a healthy BMI (body mass index); doctors like to see “extra cushion” wherever possible so that when someone becomes ill, they have the physical reserves to fight the illness more effectively.

When you simply cannot reach your daily goals for caloric intake through eating orally, many doctors may suggest the use of enteral feedings (feedings delivered primarily through a tube in the abdomen ~”g-tube”~or a tube that is passed through the nose ~”NG-tube”~ into the stomach or just beyond). This tube can be used to deliver a slow drip of a special formula overnight, or to “bolus” through during the day.

A g-tube (gastrostomy tube) is a tube that is placed directly through the abdominal wall and into the stomach. A common type of g-tube is a “Mic-Key” button. [Because Allison has a Mic-Key, and this is the only type of button that I am completely familiar with, I will expound on that information here. There are many other brands of buttons out there, but this tends to be the most common. Remember, I am not a medical professional, so it’s best to consult your healthcare team before making any changes in your or your child’s plan for healthy living.] There is a valve on the side of the button that allows you to put water into the “balloon” end of the tube that is inside the stomach to secure it from falling out.

Changing the Mic-Key button at home (without assistance from medical personnel) is rather easy and painless, although for beginners, they may find it difficult. It’s important to remember that the hole (tract) in the abdomen can begin to close up rather quickly and if the button is accidentally pulled out, it should be replaced immediately. If you are dealing with a young child, and they are upset, you may need to take the time to calm them down first and then attempt to replace the button, as clenching tummy muscles make the task very difficult. If you aren’t successful at home, it would probably be best to head for the nearest hospital for assistance (many urgent care centers or other type of medical offices may not be familiar with how to replace g-tubes).

Using the Mic-Key button is rather easy; simply line up the line on the button itself and the line on the extension tubing (be sure the white clamp is closed to prevent spilling of stomach contents) and push the extension tube in the hole until it is flush with the surface of the button opening. Turn it slightly to lock it in place.

Once you are “hooked up”, you are ready to go! There are very few brands of enzymes that can be used through the tube itself; we use Pancrecarb MS-4’s for this purpose (a powdered enzyme ~ Viokase ~ is also available, but dosing is difficult and the enzyme has been known to produce unbearable diaper rashes in youngsters). Because Allison is about 95% g-tube dependent, we have honed our skills and become virtual experts on how to get all those tiny beads through the tube without clogging it. There are many methods (like putting it through the tube itself or through the extension tubing) using various mediums (such as applesauce and applejuice) and it will take some practice. Please email me if you would like more information on how we have been able to be successful at it.

(This picture shows a Pancrecarb MS-4 on the left and a Pancrecarb MS-8 on the right. The 4’s will go down the Mic-Key ~ we can currently do up to six at a time ~ and Allison eats the 8’s orally in applesauce dipped into bananas, when willing.)

So, you have managed to get the tube hooked up, have administered enzymes, now what? Depending on what method you and and your doctor have decided on (pump feedings or boluses), it’s time to hook up to the food source. To do a bolus feeding, I attach a 60cc catheter tip syringe to the large opening on the extension set and make sure the side med port is closed tightly. I unclamp the white clamp and allow any air to expel and then I add her formula into the large syringe. This should take as much time as a regular meal to make it the most comfortable. (Allison, however, seems to be most comfortable if we go as slowly as possible; sometimes taking up to 45 minutes for a full bolus.)

Alternatively, you can also hook up the extension tubing to a feeding pump bag. The picture at the top of the page shows a feeding bag connected to the extension set. My favorite line of pumps thus far are the Zevex pumps (specifically the Enteralite and the Infinity). They are great for small ambulatory children, as the pumps are concealed in small backpacks and can be used in any direction as there is no drip chamber. If using a feeding pump, I highly recommend securing the extension tubing to the diaper or other clothing (I like to use Kendall Wet-Pruf tape; making sure there is enough slack on the line, I affix the tubing to the front of Allison’s diaper and make sure it is secure) to prevent extra pulling on the tube that may cause irritation (or even cause it to come out!).

A Word about Needing a G-tube

It is VERY important to remember that if you or your child needs a g-tube, it DOES NOT MEAN that you are a FAILURE! Many parents often blame themselves for their child’s special needs and the need for a g-tube is no different. Other parents who have been able to avoid needing to use a g-tube may question the need for them in other children; they may view the other parents as lazy and not strict enough about feeding rituals. This simply is NOT FAIR. DO NOT listen to that nonsense!

A g-tube should not be viewed as a last resort ~ IT IS A FIRST LINE DEFENSE! The healthier you are as a child with CF (including weight and growth; without proper nutrition this isn’t possible!), the better off you will be in the long run. Yes, it will take some time to adjust yourself to the thought of your child having a medical feeding device, but once you do it, you will likely be very glad you did. Using the g-tube can greatly reduce your anxiety about how much your child is eating and whether or not you are able to meet his/her nutritional goals.