From Julian's COTA Journal
Julian is doing well. He's walking tenderly, like there's some pain in his abdomen, but his spirits are up and he's engaging like normal. We received a phone call from one of the nephrology docs yesterday afternoon, to tell us that the preliminary pathology report indicated that there was some bowel content in the collected sample. What this means is that when they went in to collect the sample (they use an instrument that looks like an oversize needle to effectively take a core sample of tissue), they "knicked" (read "perforated") the bowel. As such, they put Julian on a 10-day round of anti-biotics and told us to watch for distension and inconsolable pain. So far, none of either. Please pray that he continues to heal - and that the biopsy shows the docs what they want to see. We'll see the formalized results of the biopsy at the end of next week.
This Thursday, Julian has an appointment with the ear/nose/throat docs to talk about his newly developed OSA (obstructive sleep apnea). There will probably be a sleep study at some point, but we don't know when. If they can't fit him in anytime soon, we may just vacate Palo Alto and come back for the sleep study in conjunction with one of his follow-up visits. We'll see.
In anticipation of our pending departure, Stacy did a clean sweep of our room and packed up a couple of boxes of "stuff" for shipping. We have more than will fit into our van, so we have to ship some of our belongings vis UPS. The room - basically the size of a small (!) hotel room - feels less claustrophobic already.
We're feeling especially weary at present. It seems like we should be packing up and leaving (ie. getting on with the next step in our lives) right now. For some reaosn, that's not happening. I smile as I imagine some of our friends telling us to "suck it up" and gut it out, and of course that's what we'll do. The end is in sight. It just doesn't look the way we thought it would. We're encouraged by Julian's generally sunny demeanor. He's really too young to realize any of this is out of the ordinary, so he just goes with the flow, and smiles all the way.
That's it for now. I'm sitting at San Jose airport, waiting for my flight to Denver. Stacy & Julian are back at RMH, planning their evening. I hope we can all get some good rest tonight.