Today was again very busy for Sam. He now has a Metabolic Specialist, Neurologist, Endocrinologist, Renal Specialist, Gastro Intestinal Specialist, three Therapist, a social worker, a child life specialist, in addition to the other residents, students, and nurses. It is a lot to get used to having all of these people in and out of the room so much and having so many different test done all of the time.
Sam's color continued to be off this morning and continued to be dehydrated. They have increased his fluid intake and are monitoring his output closely to make sure that he takes in more than he puts out. By late this afternoon his color looked better and he was alert, so back to his normal self which was a relief for us. It is a little mystifying that all of this happened yesterday as he had not been eating which was always thought to be the cause of his sickness.
Sam had an ultrasound of his brain today and well as his entire abdomen. Everything looks good as far as physical shape, size and location of all of his major organs. He has, however, developed kidney stones. This was most likely caused my the periods of dehydration he as encountered.
They have also run into serious issues getting blood from Sam for testing. Every vein has either developed scar tissue from being poked so much or is bruised that they actually had to delay some testing today because they simply could not get the necessary blood out of him. Tomorrow they will be changing out his IV for a larger line so that they can use it for his fluid and nutrition as well as blood draws. The drawback with this is that they have to waste some blood each time they use this and he doesn't have much to spare. It sounds like another transfusion may be in his future.
Wednesday Sam will be getting a full MRI. Because he is so little and needs to be still for this they will be sedating him. It will be very scary for us to see him like that but hopefully all of these tests and other stresses we have been putting him through this week will finally lead to some answers.