This has been one of the easiest weeks I can remember in Houston! We drove down last Thursday. We headed to the hospital at 5:30 Friday morning for Alex's MRI of his spine and SSEP. Alex was worried about having anesthesia again, but he did great. We tried a different routine for starting the anesthesia and he handled it much better both physically and emotionally. I left him at 8:30. He was asleep, but was having seizures. They wound up having to treat his seizures before starting the testing. It took right around 4 hours to finish both tests. We got to a room around 3:30. Bug finally woke up aroud 5:00. He played for a few hours and we both went to bed early. Alex woke up Saturday having made it through the night with no fever! This is only the second time in his life he hasn't had a fever after anesthesia. We were discharged about 11:00 on Saturday morning for a fun weekend with the Knights!
Yesterday, we saw Dr. J the pulmonologist. She was happy with how Alex looked. She had thought about starting him on oxygen overnight, but since he is growing and doing well right now we are going to hold off a little longer. She wasn't real happy with his PFT (Pulmonary Function Test) so she sent us for a chest xray to make sure that his lungs had healed from the pleural effusions and atelactisis he had during our last addmission. The plan is to keep things the same barring anything on the chest xray.
Today we quickly saw Dr. Koenig so she could go over the MRI results. The SSEP is not back yet. The Syrinx in Alex's spinal cord is slightly bigger, but still does not appear to be compressing the spinal cord. For now we will continue to watch it. After leaving Dr. Koenig's we went to GI. They are happy with where we are following his pancreatitis. We have feeds up to 20cc/hr and about 60% of our meds back to Jtube meds. We are switching his TPN back to 12 hours which is so much better for Alex! he is excited not to have to lug around that heavy bag and pump everyday! Dr. N also talked to us about the issues we are likely to see arise due to Alex's recurrent pancreatitis. We are hopeful the damage does not occur for years, but we can expect to deal with diabetes and pancreatic insufficiency requring enzymes at some point. After our appt we spent a fun afternoon at the park withthe Roeh girls!
Tomorrow we see opthamology, endocrinology and hematology before heading home Thursday.
Thanks for all the love and prayers.