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What I should have done differently

This is follow-up post #2 in the saga of Raya's AMT MiniOne button getting pulled out & not going back in. You know, the part where hindsight is 20/20 and I acknowledge that I should have done things differently?

In case you missed it, here's a recap. Thursday night, Raya's MiniOne button accidentally got pulled out. Even though it was out for less than 5 minutes and I've NEVER had a problem getting it back in, I could NOT get it back in no matter what tricks I employed. (which included a ridiculous amount of surgi-lube and a Q tip stuck through the G tube to keep it straight) Fortunately, we had an old yucky MicKey button in the emergency kit that went in just fine. (The tip on the AMT balloon is wider & more blunt than the MicKey, which is more pointed and narrower.) I called the on-call GI at the hospital who told me that since we had a tube in, not to bother with the germ-filled ER and that I should just call the surgeon's office the next day.

I tried again to get the MiniOne back in on Friday morning and it still wouldn't go in so I called the surgeon's office. The medical assistant I spoke to was snippy and rude and insisted that the surgeon would be able to get it in without any trouble because "she's been doing this for 20 years and she puts a Q tip in the G tube to keep the stem straight." I've since been informed that 20 years was an exaggeration and I was using a Q tip too. It didn't work, which was why I was calling. She also told me that if we came into the office, they would not use any pain medication or sedatives to make the process easier or more comfortable for Raya and I was not okay with that. When she transferred me to the scheduler, I was told that the next available appointment with the only surgeon they would allow us to see was 18 days later. Again, not okay with that. After being passed off from one doctor to another I felt like nobody took me seriously or cared what happened to my child, I decided that it was up to me to put the correct tube back in. I had to use more force than I liked to in order to get it back in but finally was able to do it.

So here's the problem. Forcefully inserting G tubes can cause a separation of the stomach from the abdominal wall. Instead of the end of the tube being in the stomach, it could potentially end up in the abdominal cavity instead, which would have serious repercussions. I felt like the risk of that happening with Raya's stomach was very low or I wouldn't have taken the chance, but nevertheless, the risk was there. At the very least, I should have taken her in to get an x-ray after I got the tube back in to make sure it was in the correct position.

Here is what I will do if/when this situation arises again. First, I should have told the on-call GI and the surgeon's office that I had a "temporary tube" in her stoma to hold it open rather than telling them that I had a MicKey button in it. If I had said TEMPORARY tube rather than old, disgusting, worn out MicKey button, they would have taken the situation more seriously because technically, we did have a functioning button in even if it was worn out and not trustworthy. Next time I order supplies from home health, I will be begging them to send us a Foley catheter for emergency purposes.

Second, I will still keep old buttons in our emergency kits but only for use if someone else is watching her and they're unable to get the AMT button back in. I've always felt like it was better to have a used MicKey button in the emergency kits than to have nothing or have a Foley catheter, but this experience has shown me otherwise. If we run into this same situation again where the AMT won't go back in, I will either push it back in myself like I did this time and then go to the ER and ask for an x-ray to confirm position, or else I will put the MicKey or Foley catheter in, drive to the ER, take the MicKey out if that's what we have in, and then go inside. If I had taken her to the ER with a gross but functional MicKey button in, I suspect that they would have sent us home and told us to call the surgeon's office during business hours. Maybe not, but if I was an ER doc and had a lot of patients to attend to, I wouldn't want to waste time on a button change if there was a functioning button in place. However, if there was only a temporary Foley catheter in, ER staff would HAVE to attend to it.

Third, if I EVER have to call the surgeon's office again and those same know-it-all medical assistants talk to me like I'm just some clueless parent, I won't settle for speaking to them and will insist on speaking to an RN/NP or having the surgeon call me. They acted like I was wasting their time and didn't take anything I said seriously. My daughter deserves better treatment than that and I should have put my foot down. There are 10 surgeons at that practice so if ours was unavailable, there had to have been SOMEBODY that could have seen her.

So in summary, if the tube comes out again and I can't get it back in, I'll put in a Foley (if we can ever get one) and take her to the ER, put a MicKey in and take her to the ER but remove the MicKey before I take her in, or get the MiniOne back in and then take her to the ER for an x-ray to confirm position.

After being a "tubie momma" for over 2 1/2 years, I feel like I have a lot of things figured out. We've had a lot of experiences that have taught me a lot, and while I know that I don't know it all, sometimes I think I know more than I really do. The truth is, NOBODY will ever know everything there is to know about tube feeding because it is so unique to every individual and every family. There are hundreds of different medical conditions that can lead to tube feeding. What works for one patient and one family may not work for another. The viewpoint of a medical provider is drastically different from the viewpoint of a parent or caregiver. Medical care is different from country to country, state to state, town to town, and hospital to hospital. We all do the very best that we know how to do and sometimes we make decisions under pressure based on what we feel is best and then later, we come to see what other options we may have had. This has been one of those learning experiences for me. I hope we never have this same problem again with not being able to get her tube back in but now that we have, I know what to do better next time and that's the most anybody can hope for out of a negative experience.

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