Well, a pretty non eventful day except that they cut out the paralytic medicine on Eli, so he’s moving around a lot more. Still sedated, so not really awake or responding, but moving his limbs around. They turned his respirator down to a different setting that is less pressurized, which was the first step. 6 hours later, they turned down the pressure and “peeps” on him to start to slowly weaning him from it. They are trying to pull off fluid so the swelling goes down and he can be less dependent on the respirator. They are thinking optimistically that it could come off as soon as tomorrow, but might not be for a few days. Either way, we’re happy about the idea of getting him out of the PICU.
One comment from a nurse hit me funny. She said, “You know, we hear how rare neuroblastoma is, but we see so much of it that it’s hard to comprehend that. But we know it’s because people come from all over the world to see Dr. LaQuaglia, so we are probably seeing most of the cases that come up.” We have met several neuroblastoma families already. Whether it’s neuroblastoma or leukemia or medulablastoma, when you meet someone else with a bald kid, you immediately have things in common.
I’m not sure what else to tell you. If you guys have any questions, you can certainly e-mail them to me (aaron@hornit.net) or you can post them on the Message Board and I’ll reply to them there to the best of my ability. I don’t know if I’m giving everyone the information they want or if there are questions you’d like answered that I’m not addressing.
We have a great new resource here, Barbara from Candlelighters Childhood Cancer Foundation who made us feel welcome in New York. You know, in Iowa we often think of New Yorkers as being rude and crass, which might still be true in some areas (as it is in Iowa), but in the medical world we’ve been pressed to find any of that. All of the doctors, nurses, Ronald McDonald staff, and even people visiting others in the hospital have been nothing but friendly and polite (as in Iowa). When complete strangers see us carrying around little Isaiah, they always say “God Bless You.” I never heard that in Iowa with Eli when he was little! 🙂
Please keep the prayers coming. You can add safe travels for Adam and Jo tomorrow to the list if you’d like. We’ll be sure to let you all know once we’ve left the PICU or once Eli is talking. That’s sure to be eventful. 🙂