If you have been following Sonzee’s journey for a while now then you are probably aware that her biggest battle has always been her gastrointestinal system. Since she was six months old she has battled with gaining weight and from trying to solve that issue we found ourselves on a downward spiral in the land of GI. We started by having a gtube placed, thinking that would solve the problem, but we all know that did nothing to help. From that point onward it has been a constant battle of trying to keep her health and keep her comfortable, lately, both I feel we are failing with.
When she hit rock bottom last May we had no choice but to start her on TPN (Total parenteral nutrition: Intravenous feeding that provides patients with all the fluid and the essential nutrients they need when they are unable to tolerate anything into their stomach/gut). We transitioned from TPN to intestinal feeds that went through an NJ (naso-jejunum-from her nose into her intestines). A lot of people assumed her tube in her nose was going into her stomach, but it was actually bypassing her stomach and going into the 2nd part of her intestines. The thought or hope (if you will) was that her stomach would miraculously turn back on and we could get her off the intestinal feeds. A year later and this has proven to not be the case (I am honestly not the least bit surprised). When she was finally big enough, we had the NJ removed and they added in an extension to her stomach tube, which is what she has now, and it is a GJ tube (goes to both stomach and intestine). We only use her intestinal port except to open the stomach side to let out excessive air in the hopes it will make her more comfortable.
She has had various tests performed on her GI system, besides showing she has extremely slow motility (movement of her stomach and intestines as far as processing food and moving it through the system), they all always come back “normal”. She has spent most her days over the last year miserable, in pain, and uncomfortable from her feeds. We cannot turn them off because she needs to keep hydration, we cannot run them any slower because she needs to keep hydration. We are stuck, grid locked by the way her body interprets typical bodily functions such as gas, digestion, and bowel movements. She was diagnosed back in November with visceral hyperalgesia, which is the term used to describe the experience of pain within the inner organs (viscera) at a level that is more intense than normal. A diagnosis that gets her nowhere but to take another medication that does nothing to relieve her symptoms.
I have reached my breaking point with these GI issues. Her doctors tell me they have done everything they can do. I agree that they have tested plenty, but I do not agree that there is not some option out there that would be a better answer for her. We have an appointment with her palliative care doctor next week because her quality of life is far more important to me than the quantity. She CANNOT be this miserable any longer. It is beyond disheartening to watch her suffer daily. There must be some solution besides “dealing with it” and another medication that only appears to be a solution but in reality, does nothing long term. I am hanging onto a small thin thread of hope that we will reach some sort of resolve next week, whatever it may be…but let me tell you, after the past two years it’s really challenging to believe we will find a winning solution.