Today's topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact. (The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area, however, there is a need for basic knowledge among a wider range of medical professionals)
This is another area where I have always felt very blessed when it comes to Raya's health care team. Her pediatrician recognized the need to refer us to a pediatric GI specialist, which I greatly appreciated since that was not something she ever did with Kaida in spite of the fact that she was below the bottom of the growth chart for 18 months. (in her defense, Kaida WAS maintaining a consistent growth curve, but in hindsight I really think a GI doctor could have made a big difference for her as an infant). We've been pretty lucky with the doctors we've had on a regular basis understanding the need for Raya to have a feeding tube. I've never once had a doctor question whether or not she needed it, although our pediatrician did seem rather shocked the first time I took Raya to a well check after she'd gotten her NG tube. She had no idea that that's what sending us to the GI would result in. I don't think she's had very many patients with feeding tubes. I think she was expecting (as was I) for the GI doctor to just write us a prescription for a different reflux medicine so the feeding tube was a surprise to her.
Anyway, as far as the actual topic for the day...
I remember one of the resident doctors during Raya's first hospital stay telling me one day that since Raya had taken 75-80% of her formula by mouth that day, that she was going to talk to the on-call GI doctor about taking out the feeding tube before we went home. Instantly, anxiety washed over me at the thought of no longer having this safety net that we had JUST gotten. I know she thought she was doing me a favor by telling me that, but what she didn't understand was that for 10 weeks, I had struggled just to get enough into Raya, never mind actually making up for how much came back out. Then there was the unreliability of giving her medications by mouth, which she sometimes didn't swallow all of and sometimes vomited right back up. I felt like our hospital stay had JUST started to get us back on the right track (or at least back in the general vicinity of the train station :) and the thought of going home WITHOUT the feeding tube terrified me. Luckily, the on-call GI doctor agreed with me that having one day of decent oral intake (but still not even 100% oral intake) was not good enough to merit removing the tube. WHEW!
Another experience that comes to mind was when Raya was in the hospital after her G tube surgery. It was supposed to be a 24 hour stay but she woke up from anesthesia with a fever and was having horrible leakage from around her tube and ended up staying for 5 days. When the resident doctor decided to start trying to feed her formula again, he didn't even ask me what her feeding schedule & rates had been like before we came. He knew we had been doing a continuous feed and had been trialing bolus feeds during the day, so his orders were to do her continuous feed at 70ml/hour which was faster than she'd been getting it at home, and to do the "bolus feeds" at 45ml/hour. (Just FYI, bolus feeds are supposed to be fast and continuous feeds are supposed to be slow.) When I found out about that, I asked him if he had cleared that with Raya's GI doctor. I don't remember what his exact words were, but he led me to believe that he had discussed the feeding schedule with her and that she was on board with it or else I would have put my foot down. As it turned out, he had NOT talked to Raya's doctor about it. It made me angry that he just changed her feeding schedule without consulting any of the people who had actually been involved in Raya's ongoing care (i.e. ME and/or her GI doctor). I could have told him a number of reasons why his new schedule wouldn't work for her but he never asked and didn't seem to be interested in my opinion on the subject.
My advice for doctors
One thing that I would say to doctors is that it's important to remember that for many parents, their child's feeding tube will be the first one they've ever seen. The experience of having a child whose medical condition results in the need for a feeding tube can be overwhelming in itself, let alone having to learn how to feed the child in a way that is completely foreign and unnatural. As the physician who is ordering the feeding tube, your attitude and the way you present the feeding tube as part of the treatment plan can have a HUGE impact on the way that the parent ends up feeling towards it. If you don't choose your words carefully, parents can be left feeling like the feeding tube is their fault. Even if it IS a result of a parent's actions or inactions (whether intentional or not), feeling like that is not going to help the situation. Many of us have already gone over and over in our minds all of the things that we could have or should have done differently and already feel like it's our fault in some way, so adding to that is not necessary or helpful. If you take the time to explain the reasons why you feel the child needs a feeding tube and give them the opportunity to ask questions until they understand it themselves, the transition won't be as difficult.
The other thing that is SO important for parents is to have ongoing support. This means having a doctor who manages the care of the child's feeding tube AND access to that doctor, whether directly or through a nurse. There have been countless times when we have avoided having to go to the doctor's office just because we were able to either call or email her wonderful nurse. Sometimes they were things that she could help me with and other times it was something bigger that she would contact the doctor about. Either way, I had the help I needed the same day. In the long run, it saved ALL of us a lot of time and trouble.
Another form of ongoing support that I think is equally important is for parents of tube-fed kids to be put in touch with other parents of tube-fed kids. Obviously there are privacy laws that prevent medical professionals from being able to just hand out contact information to patients' families, but I would have LOVED to have had more parents to talk to back in the beginning. When you're dealing with something that is high-maintenance and physically and emotionally exhausting like taking care of a child with complex medical needs, sometimes you just need to vent to someone who understands what that is like. As I mentioned yesterday, the nurses at the hospital did a great job teaching me the technical aspects of how to take care of Raya's different feeding tubes and gave me suggestions for different things, but as wonderful as they were, their knowledge was limited to what worked in a hospital setting. When the home health guy came to bring our feeding pump and all the supplies that went with it, he spent about 5 minutes showing me what everything was and explaining how to use the pump but that was it. I didn't even get a manual to teach me how to use it or how to troubleshoot. It would have been SO helpful to be able to ask people who had the same feeding pump how to fix the problems that came up with it. Fortunately, I came across websites & facebook pages like Feeding Tube Awareness and Mommies of Miracles and have been able to connect with hundreds of other parents who can lend me support in a way that my family & friends aren't able to (like what to do when your feeding pump won't stop beeping, which types of extension tubes are best for which uses, the best kinds of medical tape to use for different things, etc.) Having these types of support is SO empowering for a parent!
So if you're a doctor or nurse who happens to read this, PLEASE refer your patients with brand new feeding tubes to these facebook pages & websites:
Feeding Tube Awareness (website: http://www.feedingtubeawareness.org/)
Mommies of Miracles (website: http://www.mommiesofmiracles.com/)
And these are helpful too:
My Mic-Key (Kimberly-Clark's Mic-Key G & GJ button)
The Oley Foundation
Applied Medical Technology (AMT)
The Mini-One (AMT's G tube button)
But mostly what I want to say to medical professionals is THANK YOU. Thank you for caring enough to dedicate your life to taking care of children with complex medical issues, thank you for being patient with us parents as we are learning how to care for our medically complex children, and thank you for trying to see things as we see them so that the standard of care on both ends can be as high as possible.
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