At Home in 8D

Well, we're out of the ICU and in 8D. They've had to temporarily put us in one of the bone marrow transplant (ie. bubble boy) rooms, but I'm not complaining because they are much bigger than a normal room.

To catch everybody up, Benjamin was taken off the ventilator on July 21st. By his birthday 2 days later he was off the sedatives enough that he was at least trying to play with the boxes and ribbons with which his toys came. As the weaning progressed, the "Christmas tree" of pumps and wires was cut back until, on his last day in the ICU, he only had 1 IV in his central line and the feeding tube. Benjamin was moved to 8D on July 25th, where he continues to progress with leaps and bounds. He is no longer on continuous feed, but is being given "meals" through his feeding tube every 4 hours. He can now sit up normally and has started rolling over again. He still can't quite push himself up to sitting, but that will come in short order. As Benjamin's strength and energy return so too does his smile. As you can see in the picture, he loves sitting on the window sill watching the traffic going up and down the mountain on Atwater. He is also enjoying all his birthday gifts and is babbling again, now that his voice is back. The doctor even said today that the nurses all want to be assigned to him.

Before I paint too rosy a picture, let me just say that we take these small pleasures where we can, because we know that this is temporary. Benjamin has started losing his beautiful soft baby hair. It is falling out not in clumps like I expected, but as an ongoing heavy shedding. Also, the chemo has reduces his appetite and altered his taste buds, giving everything a metallic taste (so the nurses and doctors say) so Benjamin has shown no interest in the bottle or in food (thus the feeding tube). He also gets periodically cranky, fussy and inconsolable, due to either the chemo or withdrawal. Finally, we know that the good days are numbered, since he'll hit rock bottom again with each of the next rounds. We are literally on a roller coaster, and right now we're slowly clickety-clacking our way to the highest point, knowing that soon we'll be barrelling down at break-neck speed, screaming all the way, clinging to the safety bar for dear life, with no way off until the very end.

"With no way off until the very end". Roger and I never even questioned what our "duties" as parents were when we found out how sick Benjamin was. The big question was (and will continue to be) how to keep Emily's life as normal as possible while we drop everything to take care of Benjamin. Sadly, we've learned that not all parents share this view. While in the ICU, Benjamin was in an isolated room with a window looking into the rest of the ICU. In a bed immediately under this window was a tiny but adorable 4 month old boy named Mark. He too was on a ventilator, and while he got plenty of attention from the medical staff, we never saw any family. Finally, one day seeing a hospital volunteer in her red apron sitting next to his bed, I asked a nurse about it. The poor wee baby had been abandoned here by his parents. Upon recovery and discharge he will go to a foster home. Roger also found out from Benjamin's night nurse that there is a girl Benjamin's age currently being treated for cancer in 8D who has also been abandoned - and that she's not the first and won't be the last. How anybody could even think to do such a thing is completely beyond me. I mean, these are innocent and helpless infants, not furniture to be discarded on moving day. And it's not like you have to pay for treatment here. Honestly, this kind of behaviour is just sickening. Mind you, I'd be willing to bet that little Mark's respiratory problems stem from his parents' alcohol and/or drug use. UGH! Still, I'm trying to figure out how I can help them while I take care of our own sick little guy. If anyone has any ideas, I'm open to suggestions.

BTW, blogging from the hospital will be difficult, since a computer virus made them tighten access to outside websites. I'll have to e-mail posts to Roger so that he can copy and paste them into the blog, but I'll only see any comments when I use an outside computer.