12-30-16 Update

Oliver's bladder test showed no signs of physical problems, but did reveal an enormous bladder. The x-ray inadvertently showed that Oliver is very constipated again, so we are going to get to work to try and help him with that ASAP. The VCUG test was incredibly painful for him and something we hope to never have to repeat. He had over 1 liter of contrast in his bladder at one time! Ouch!

Oliver's brain MRI is stable, as expected. No meaningful changes from his last one this summer.

The mTOR inhibitor is not an option for the constellation of symptoms we are seeing, so it is off the table. We don't think the side effects are worth the potential benefits right now. The neurologists' only other thought is to do blood work for genetic testing in case Oliver has an additional disorder. It will take at least a month for those results to come back. So in essence, neurology (at least here) has done what they think they can do.

Dr. Thiele and Dr. Wong have agreed that discontinuing Onfi could help with the constipation and/or urinary retention, so tonight we are discontinuing it. There is no better place to get off meds than the hospital; so if we have to be here, why not eliminate some variables?

Dr. Michelle White is the attending physician that is leading the team of hospitalists, and we are super impressed with her. She has been a terrific advocate and thoughtful clinician. She has determined it is not safe for us to go home until another video swallow study can be completed. We are worried Oliver may now be aspirating on food. We also need to make sure he can walk normally, and we get a bit more data on the desaturation events. If we were to leave and he had a significant aspiration and stopped breathing, the doctor said it could be "catastrophic". We obviously don't want that, so we'll be here until at least Tuesday and later if he will need a G-Tube (which is the only solution for a kid that is aspirating all liquids).

So the plan over the weekend is: meet with the G.I. docs to get more clarification on how to keep his bowels moving, meet with P.T. to address anything that could have changed with all these bed ridden days, and then perhaps meet with the supportive care team. We want to keep Oliver comfortable as he has seemed in some kind of pain for almost two straight weeks. Andrew and I will switch off spending the night here, and hope to get out a bit when people who know Oliver well come and visit. We got this. I am just bummed I left my confetti cannon at home for tomorrow night...