A little after noon on Wednesday Fletcher received his fifth stem cell treatment, fourth by lumbar puncture. Did he tolerate it better than last Friday? In a nutshell, he has done better, and he has done worse, the latter by a long shot. This time it was pre-treatment that was probably the hardest part. Unlike the Ramones, this boy just doesn't want to be sedated.
They started the IV quickly, but Fletcher has figured out what happens after a couple nurses show up with the stainless steel tray and tourniquet in hand, so he started preemptively sobbing this time. And just when I got him calmed down from the IV stick, it was time to try to sedate him.
The first spinal they used di.azepam pre and post treatment, with minimal results, although he did fall asleep afterward, but I think it was just because he was already tired. Second spinal they used di.azepam pre treatment and chl.oral hy.drate post treatment. This resulted in a one hour nap. So, with seemingly at least a little success, they used the chl.oral hy.drate pre treatment for his third spinal, and that is when things got really bad, and they ended up doing a phe.nergen IM shot post treatment which translated into a two-hour nap, but that may have been because he was just plain exhausted by screaming at that point. So, following the natural progression, this time they tried the ph.energen IM shot pre treatment.
And surprise: it didn't work. After I calmed him down after the painful IM shot (once again, he shrieked like never, well once, before) I tried swaying and rocking him to sleep for about 30 minutes to no avail. When the doctor would come check on him he would cry, because, since he has yet to be completely sedated during the prior treatments, he knows what the doctor plans to do. I just about had him asleep and they suggested topping off his IV with a little di.azepam to tip the scales just a bit and send him over the edge into a nice slumber. I agreed and it was a mistake. He went from eyes drooping to wide open, but he was definitely loopy. He kept "oohing" at me a grining. So we decided that was the best we were going to do. The fact he is not asleep doesn't really affect the procedure because he doesn't move once they are holding him in place. And it doesn't actually hurt because they use local anesthesia. It is just better if the child is asleep, though, as you can imagine.
Personally, I think that the doctors are sabotaging their own sedation efforts, by giving the patients an injection of "anti-allergen" medication (de.xamet.hasone) in the IV before they try to sedate them. I know dex is a steroid, and my nephew always goes berserk after he gets steroid treatments for his asthma. So I did a little online research and found the following documented side-effects for dex: difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness. Hmm....
Fletcher cried a bit during the procedure, but was calm when they rolled him out of the treatment room. We went back to the room and read books, took a two-hour nap (me, too!), and then passed the rest of the time eating crackers and drinking rice milk (borrowed from our British neighbors since I had run out the day before). He got bored and upset a handful of times, but was relatively easily calmed (well, nearly anything would be relatively easier than Friday) and all in all it was an uneventful, but long, six hours.
We did a few laps around the unit after we got the okay to be vertical, and an hour later, were greeted by Trevor's return! I thought Fletcher would be happier to see him, as he would light up with a big grin every time I mentioned daddy's name, but he actually didn't seem to care one way or the other. I, on the other hand, could not wait to see him so I could hand Fletcher over and actually take a nice long shower without needing to rush into the next room at a moment's notice. Oh yeah, and because I missed him, that too. Of course.