Day 454 - Leaking G-tubes & More Broken Ventilators

Tuesday, March 29th, 2022

Early in the morning, the RT from our DME showed up with another ventilator but unfortunately this one sounded worse. 🤯 She even made a comment about how another family she was seeing did not have a back-up ventilator so we were lucky that a 2nd one got approved. Like we should be grateful we have one working ventilator. Really? It took 6 months to get the back-up ventilator approved by insurance. The blood, sweat and tears of Mom, the Pulmonologist and several others. But we shouldn't complain about that back-up ventilator not even working...? The whole point of having a backup ventilator is that when these ventilators die (which clearly they do quite often since we are in the situation) James has a second chance. If his ventilator were just to stop working we would need to bag him with an ambu bag and call 911. We would be bagging all the way to the hospital with an increased chance for brain damage or death. So yes we went to the trouble of having insurance cover a backup ventilator and although we wish everyone could get it approved, we should not be punished for being resourceful and vigilant. 

On other note, we continued to try to bolus feed him through his G-tube and it is not going well. Several outfits changes and bed sheet changes. Mom has now put down a disposable chuck to eliminate doing laundry 3x a day. It is leaking out of his stoma and/or emptying into the Farrell bag. His stomach isn't tolerating the quantity of 95ml/hour.

Golden Brown Curls

Yoga pose: Utthita Hasta Padangusthasana

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...