feeling better

Lars did some great playing, sitting up in the playroom. And he figured out how to get the velcro IV cover off. Go Larzapan. His work on that dates back probably two admissions, so it's a big coup indeed.

MRI & MRA were yesterday afternoon. MRI looked basically just like his last one ("normal for Lars") & we don't know about the MRA. After a good post-sedation nap, Lars screamed from 11 p.m. to 4:00 a.m. last night. He hadn't had any morphine for 10 hours, and they gave him what they could via IV. What I have suspected for a while was then proven: it doesn't help. At all. So we're now off the round-the-clock morphine, and likewise off the benadryl he was taking to alleviate the itchy morphine side effect.

As has been his pattern, a few days in the hospital including IV fluids, not having to eat so much, and some test requiring general anesthesia or sedation and Lars starts to feel better. Interesting, eh?

We talked with CCS today about the eating question. Perhaps somehow when he needs to take all his food & liquid in via mouth, his system can't handle it. The other two options are a central line and IV nutrition, or a gastrostomy tube (g-tube). I think we'll be doing the initial evals for possible eventual g-tube insertion. There are many ways it could be a really good thing. We could always keep him hydrated & fed, and we wouldn't have to assault him with his oral meds twice daily. We wouldn't have to always spend the current 6-7 hours a day feeding him (this is the majority of his good awake time that could be spent playing & learning), but he could still eat all he wanted to.

Big guy's waking up; gotta go. We adore most of our nurses here, but tonight we have the ^*#@% nurse whom we had on our worst night ever a few weeks ago. Wish us luck.