I have had several friends call me recently about their Myotonic Dystrophy (DM) family members who are being released from the hospital with a feeding tube. My friends and their loved ones are very alarmed because feeding tubes are seen as an end-of-life procedure. The first step with feeding tubes is an NG tube or nasogastric. NG tubes go in through your nose, down your throat and into your stomach and it’s always visible since it is taped to your cheek when you aren’t using it. They are quite uncomfortable and the individual is told to consider coming back and having one placed into their stomach. That feels so permanent and scary that my friends reached out to me to get more information before proceeding.

I am going to share our journey with feeding tubes. I wish more medical specialists had this information because Michael’s feeding tube has been a great boost to his quality of life instead of being an end-of-life option. The DM community could greatly benefit from a more relaxed attitude about feeding tubes.

In both 2006 and 2007 Michael ended up in the hospital with aspiration pneumonia. The first incidence occurred when Michael was on a date. He was focused on the conversation with his date and not really paying attention to his food. Michael choked on the lettuce in his salad. Three days later he was really sick and was running a high fever. We took him to the hospital where he was diagnosed with pneumonia. We were new to the concept of aspiration pneumonia and it took us a while to figure out that he had inhaled lettuce into his lungs. Anything foreign in your lungs becomes a breeding ground for bacteria, hence the pneumonia.

Another alarming occurrence was one evening when we were eating dinner and Michael started to choke. Kent had to give him the Heimlich maneuver. This was a very scary episode which caused me to feel the need to be always hypervigilant around meal time. In order to prevent choking I always cut up Michael’s food for him in an attempt to reduce the chances of choking.

One day I was talking to Alice Gunderson, a dear friend whose husband also had DM. She started the first support group in the country in California which we traveled to every year. Alice gently told me about feeding tubes. She let me know that they increased the options to safely eat for those with DM. The DM individuals could put the necessary nutrition into their tube and then eat through their mouths the foods that were safe, such as ice cream. She had several in her community that had resisted getting feeding tubes because of the fears that it is for end-of-life. But, once they had the feeding tube placed, it made their lives so much safer and they were able to put on a little weight. The extra nutrition actually improved their ability to be more active which also improves quality of life. After having the tube placed these individuals wished they had gotten it sooner.

Being the type of person that when something feels right I set things in motion, we quickly had appointments with a nutritional team. The nutritional specialist’s name that we went to (and continue to go to) is Merin Kinikini. First Merin had an NG tube put in Michael. We erroneously assumed that Michael would need to consume everything through his tube. We put supplement in a syringe and delivered it through the NG tube. This was tedious and sometimes the syringe would slip out and I would squirt it on the ceiling or the walls. This was an 800 calorie supplement that was thick and sticky, what a mess.

Michael hated the NG tube. It was annoying both being taped to his cheek and the sensation of it going down his throat. It was also visible and Michael felt self-conscious. Eventually Michael had a feeding tube placed in his stomach. This needs to be done surgically so that they can have an interventional radiologist guide the placement. As usual, with DM individuals, anesthesia needs to be used minimally and very carefully.

Eating is a lot of work for DM individuals because their muscles fatigue easily. Michael’s siblings were actually jealous of Michael’s feeding tube. But not enough to get one themselves.

Michael started putting on too much weight so we stopped using the feeding tube but left it in while we tried to figure out if he should have it removed or not. We didn’t want to remove it if he was going to need it put back in. Michael did have one more choking episode where he needed the Heimlich maneuver and we met with is speech therapist who helped us figure out the pattern for Michael of having choking episodes in warm weather. We realized that Michael was probably dehydrated. When your muscles don’t get enough fluids and electrolytes then they don’t function as well.

In my family we have found that the poor swallowing muscles allow clear liquids to trickle into their lungs therefore my family avoids clear liquids creating a potential for dehydration more so than for the average person. This was Michael’s case.

We started using Michael’s feeding tube for clear liquids and anything else that Michael didn’t like the taste of like Prune Juice and liquid protein. Now Michael is “watered” twice a day. As long as he stays hydrated he can consume food orally. We have had to adapt his diet. He doesn’t eat salads, rice, raw vegetables and fruit that has skin (like an apple). If he has a piece of meat his caregiver needs to cut it up into fairly small pieces. If he starts to lose weight we always have the option of putting additional nutrition through his tube. Since the placement of Michael’s feeding tube he has been able to move into an apartment with his brother Chad and live independently of us. I didn’t think that would ever be an option for Michael.

Michael even wrote a paper titled “My First Feeding Tube.” I’ll post it tomorrow.