Since the show went up I've had a lot of kind feedback about the photos but also a lot of questions about Katie and Jaylen. I take it as a good sign that people are invested in what happens to him, it means my work is doing what I want it to.
What Jaylen has isn't really a disease- it was a birth deformity. I've seen photos of him minutes after his birth and he is the most perfect, tiny baby who happens to have his bowel and intestines outside of his body. The solution seems simple- just put the organs back in and all should be fine. But it's a lot more complicated with Jaylen. Despite all those surgeries ( 19 and he is only a bit over 3 years old) making his stomach "pump" and his bowel's work has not yet fully succeeded. When you can't digest your food it has to come out and when it can't make it to your bowel it will instead expel as vomit. As any parent knows when a child vomits they can loose weight quickly but for Jaylen the problem is heightened as he can't take in nutrients when he is so sick. So every night he is connected to TPN, a nutritional compound the runs into his veins bypassing his stomach. At the moment, without TPN Jaylen's body would basically starve to death no matter what he ate.
People have asked if he is home, he is home during the day but spends every single night in hospital connected to the machine. To allow Katie to administer the TPN at home would mean a lot less hospital but it is very costly and something she is hesitant about as it involves her administering full medical care and taking all that responsibility.
TPN, as much of a miracle as it sounds, has complications. If used long term it will damage Jaylen's liver, if used indefinitely it will kill him.
Jaylen's medical team are brilliant and are trying every option but unfortunately that is what it is- trying. They have no solutions because they have never had a child like Jaylen.
That is why Katie is stuck in such limbo, why it is so hard for her to put her baby to sleep every night in a hospital bed- she has no answers and all the unknowns weigh deeply on her. She is 22 years old, strong as hell and scared shitless about her son's future.