After finishing treatment, and failing to thrive by consuming enough calories by mouth, we made the decision to have a "G tube" surgically inserted into Elise's belly. This sure was more attractive than the tube dangling from her nose as we experienced for months prior! For the next couple of years, we struggled on with Elise getting 99% of her nutrition through her tube using various prepackaged nutrition formulas. In the beginning we didn't know it, but many of our struggles came from Elise's body rejecting something in the formula. Throwing up (multiple times per day) was a daily part of our life for more than 3 years. It is amazing what you can sit through, talk through, and even eat through when you get used to it! Even 4 year old Abby was skilled at eating with one handing and holding the puke bucket for Elise while she was getting sick. That's a different kind of cute isn't it?
Kelly was actively involved in researching some alternatives to feeding Elise. I wasn't against it, but what we were doing was pretty simple, we knew just how fast we had to be to catch puke across the room, and we were rarely ever caught anywhere without a puke bucket within arms length. Most days, things are hard enough. I didn't want anything that was going to be requiring more work for any of us.
In June we made the decision to transition Elise to a "new" diet that would get her away from formula and back into eating real food. This is known as the "blenderized diet". After only a couple of days we decided not to transition any longer, but to just make the switch immediately. We saw some amazingly positive things right away. We made it a 24 hour period without any vomit! (are you getting sick yet?) They funky dirty kid smell that Elise was always emanating was now gone. Most importantly, she began to sleep! Several years of getting 3-5 hours of sleep per night and waking up multiple times in the night was over just like that! Hallelujah!!!
What we didn't anticipate was a whole new problem that would soon surface. In the scheme of things, this has become more of an annoyance than anything. As long as she is sleeping, not puking, and remaining healthy, I will take annoyance any day! When we would hook up Elise's pump to her and feed her meals we began to notice that her pump was beeping A LOT more frequently than it ever had before. Anytime there is something "wrong" with the pump, it has an alarm that beeps. If there is no flow in to the pump it beeps. No flow out - beeps. No food - beeps (even though the bag is full!). Sometimes in the middle of feeding her it would alarm and say "load set" making it seem as though we never even loaded the food bag at all!
We contacted the company that we get the pump from relatively shortly after the issues began. After trying several trouble shooting tips I was told, "the pump isn't made for a blenderized diet". What!?!?!?! It's not made for food??? It seems the pump, and others like it, are manufactured to only handle formula that has to meet the stringent guidelines of the maker of the pump. Never mind whether it is the best "food" for the person receiving nutrition, as long as it is the consistency needed to please the pump manufacturer.
After a couple of months, Kelly noticed that it seemed like there was a lot more leftover food than there should be once a feed was completed. One evening during dinner, we were at the table for about 30 minutes with the pump working away in silent bliss. Suddenly, the silence was broken by the shrill beeping of the dreaded pump. When I went to reset it, I noticed that I had forgotten to un-clamp the tubing, which meant that Elise had not received any of the food that was supposed to be going through the pump. When I investigated, I noted that it said she had received more than half of the dose that she was supposed to get. There was NO way that could have happened.
That evening I contacted the 24 hour help for the pump manufacturer and I was told to contact my provider to have the pump replaced immediately. A few weeks later I was contacted by an "investigator" from the manufacturer who was gathering information about the malfunction to report to the Food and Drug Administration (FDA). I assured them I wasn't trying to make a federal case out of the issue, but rather trying to see that my daughter is getting the nutrition that she needs. Before hanging up I was reminded, "the pump is not manufactured to handle the blenderized diet". Seems like I had heard that before. It also appears there is no pump manufactured to handle the blenderized diet.
Generally, some of my best ideas come when I am really frustrated and backed into a corner. The excessive beeping was not only annoying, but the malfunctioning pump was also getting in the way of us ensuring that we were providing the proper nutrition to our daughter. One day while reading an announcement at work, it hit me. I am surrounded by some of the best and brightest in college students today, and some amazing faculty that are doing some awesome research that is currently impacting many things in the world and working to make the world a better place for tomorrow. Why can't we be a part of that? I didn't know who to call, but I was hopeful I could find somebody that might be able to make a connection somewhere and help me/us to get our foot in the door.
One day that connection was made to an instructor in the Biological and Agricultural Engineering department. He called me initially to get a little more information about what was going on. I explained what was happening, how we had made it to the point where we were at, and what I hoped to accomplish by having someone research the issue. He seemed interested from the beginning, but assured me he would need some time to think about it from various angles, see what kind of research is currently being done on this issue (if any), and check the interest of his students on a project such as this. I was thrilled within a couple of weeks they had committed to research the problems we were having with Elise's pump and try to help us find a long term solution! As we have learned in the past several months, this is not a unique problem for us. ALL families using the blenderized diet experience the same pump troubles. It is a widespread issue in the feeding tube community.
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| Class is in session with Professor Kelly |
Will anything come of this research? Who knows. We are just glad to have someone listening to our issues, finding ways to trouble shoot the problems, and hopefully helping us and thousands of others lead a more simple tube feeding life. I am hopeful that, given sufficient time, we can figure out how to have a long term solution. I would be proud that some students from my Alma Mater figured out a way to solve a problem that has been plaguing tube feeders for a while. Most of all, I would be highly pleased that I had the idea and the courage to seek out help in a unique setting. Like many things, we are all about finding answers to our unconventional issues in unconventional places.
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