We are potentially facing one of our biggest GI/feeding fears. Eli's body is struggling. We are using the J tube to much and his body isn't handling it. We had hints that this might be starting a few months ago and it's getting considerably worse. He is flinching when we push meds and fluids, and having alot of diarrhea, especially after larger doses of meds/flushes/feeds. We obviously have no choice but to use the J tube (which feeds right into his intestines), as his stomach doesn't work and hasn't since November of 2010. Eli is having so much diarrhea that he is struggling to pee as much as needed, as well as a massive skin breakdown. He is screaming when he has a movement and everytime we need to clean him. The doctors are concerned. His GI has decided that we need to move forward with an Upper and Lower Endoscopy. Eli will be admitted next Tuesday and will have the procedures on Wednesday. His complex doctor and I spent all day emailing back and forth yesterday and he is on our side. He agrees that this is a major quality of life issue. He believes we will need to accept the risks associated with a central line to allow for quality of life and pain reduction, as it's causing Eli alot of pain. We are back to giving tylenol frequently and have greatly increased skin care and creams again.
As much as the risk of a line scare me, hearing my son wake up in the middle of the night screaming in pain scares me too.
We are also continuing to have issues with temp control, and haven't seen anything under a 100 lately. Between the temps and the hydrations issues he's been pretty fatigued as well.
We will update more as we know more.