Please remember us tomorrow as we travel back to UCSF Children's Hospital for Silas's MRI. This is a routine follow-up study six months after his Chiari decompression surgery. Because he will need to be sedated for the study, he will be fasting after midnight tonight, which should make for an interesting drive. We'll leave first thing in the morning and hope to be back by tomorrow night. The MRI is strictly a standard follow-up study and not an emergency. Coordinating the special machine Silas needs for his level of MRI with the anesthesiologists who work with babies with trachs and the hospital space is a little bit tricky--it turns out this particular outpatient combination can only be arranged on Wednesdays.
Silas has been doing significantly better over the past two weeks since his last appointment at UCSF. He has been vomiting much less than before (1 or 2 bottles per day instead of 4 or 5) and appears to be gaining weight. He feels much stronger and healthier this week. He is now able to keep down almost all of his bottles, including his first bottle of the day, which he almost always threw up the last couple of months.
Silas came down with an infection last week with an acute cough that would make him get red in the face, empty his lungs, and often lead him to hurl. His pediatric pulmonary doctor prescribed a five-day course of antibiotics which worked wonders. The cough is gone and Silas is now sleeping for longer stretches at night, 3-5 hours at a time, and needs to be suctioned much less than before. He also rarely coughs hard enough to make him vomit now. He is learning to catch himself and stop vomit before it starts, which is making our job much easier. He's also beginning to take naps (a wonderful improvement)--usually one in the morning and one in the afternoon averaging about 40 minutes. He seems to be doing much better now. We'll have follow-up appointments with his pulmonary, ENT, and GI docs in the coming weeks and some more studies that should tell us more.
Tomorrow's trip should hopefully just be a quick one-day trip, but we've learned to always pack a bag just in case. We'll post news from the MRI when we get the report.
