4th of July was the four month anniversary of Evan’s accident and his life at the hospital. Four months…how did that happen? The baclofen pump has been in place for nearly a month and the quantity of the drug has been increasing steadily. Evan is now at 900 micrograms (equals 0.8milligrams – a far cry from the 60 milligrams he was on orally). Evan’s body is much more relaxed, though he still has storming episodes where his whole body stiffens up and gets agitated. He continues to stay in the PICU to ensure his heart rate and respiration are monitored closely, since the baclofen can relax the body too much and make a child stop breathing all together. Some of the nurses and doctors also think that Evan’s agitation is a result of his feeds, so they have turned off the formula he receives through his PEG about a week-and-a-half ago. Instead, Evan receives TPN, which stands for total parenteral nutrition and includes all the essential salts, glucose, amino acids, lipids and vitamins via IV making it nutritionally complete . We are not convinced it is a feeding issue, but his neurosurgeon wants to hold off on food as a variable until we capture the storming episodes and bring them under control. In the next few days they GI Doctor is going to go in with a video scope to study Evan’s whole GI Tract. Everyone is out of fresh ideas and this test may reveal the source of his extreme discomfort. In the mean time we will remain in the PICU.