Day 282 - Farrell Bag & G-tube output

Friday, October 8th, 2021

The only big change we noticed is that James' G-tube is having major output. The erythromycin is supposed to help with this. 🤷🏻‍♀️ He is very sensitive to a large quantity in his stomach. You can tell when he's having reflux. 99% of the time if James is upset there is something wrong. Sometimes he needs to be manually vented with a 50 ml syringe to release a build up of air (the ventilator causes this). Other times it's just simply lowering the Farrell bag so that his stomach can drain.

Most people do not use the Farrell bag like we do. They just have it connected to the feed. In Jamesy's case his G-tube is being vented 24/7 (exit only) to this bag, whereas his J-tube is being fed 24/7 (entrance only), as well as meds. Those that have just a G-tube can be fed and vented at the same time. 

The FARRELL* Valve System is a closed reservoir system intended to allow the evacuation of excess gas from patients utilizing an enteral device. The bag is vented to allow the escape of gas, while also providing a container to retain excess formula in a closed system. The FARRELL* Valve provides a channel to constantly decompress the stomach, allowing the stomach to fill at its own pace. The closed overflow reservoir prevents caregiver exposure to gastric contents.

Sometimes his Farrell bag gets up to 100mls. In cases where it's time to change out his GTube extension and Farrell bag we don't just throw out his gastric juices, that could mess up his electrolytes. Instead we empty the Farrell bag into a measuring cup, on average it's about 12ml but on Friday night it was about 50ml. So we end up giving that back to him in Pedialyte, 10mls at a time. So we spaced it out throughout the night from 10pm to 7am.

James wouldn't even have to deal with any of these GI issues, and wouldn't even have a GJ if it wasn't for getting the trach. They kind of go hand in hand. If you have a trach you get a G-tube so you don't aspirate. Once James get on lower pressure (a lower PEEP), currently he is on a PEEP of 12, then we can start talking about a swallow study. This is the first step to eating by mouth.

Mom again spent hours on the phone. Here is an example... True Story. Currently Medicaid does not have the correct address or phone number for James' account. Seems important, since they are saying that they have not been able to contact us! So Mom was on the phone speaking with Medicaid updating this information. After she was done inputting she stated, "This information will only last 10 days in the notes here. You need to call Florida Medicaid Managed Care for them to be able to update your information permanently. Mom calls Florida Medicaid Managed Care and they said, "You need to contact either Department of Children and Families or Social Security, whoever you have your Medicaid through". Mom calls Social Security, but this time not the local office, the main Social Security number, the one where you could wait on hold for 2 weeks. Well magically they pick up within an hour. Mom goes over the whole situation, letting them know that we need to get this information updated. He responds, "I have the correct address and phone number in my system". 🤯 He is at a loss of what to do next. Mom then contacts the new Medicaid number and is just trying to log on to the site, but nothing is working. It's not excepting James's birthday, his Medicaid number, just nothing. After spending 45 minutes on the phone with someone, they finally transfer the call to their supervisor. The supervisor stated, "I don't know what's wrong with the site, just keep trying". 😦🔫 Hours upon hours with nothing accomplished. 

Lastly, forgot to mention on the phone with Cigna earlier in the day threatening a lawyer since Cigna refuses to cover the cost of a custom Trach and 2nd ventilator. Both of those are absolutely medically necessary and required for his survival. The denial and appeal process is just a waste of everyone's time. On top of this, we received a denial for "procedures" that he didn't even have. The office is possibly billing our insurance for false claims OR it's just a billing error. Either way it's another thing to get fixed. 

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭