Shell and I went to the hospital today for Mikey's 2nd MRI. The Doc was hoping to discover something that might explain some of his muscle spasticity - but likely nothing is going to show, as was the case at the last MRI.So we were told to be there at 6am for the test and we could be in the room with Mikey for the test and it would take 3-4 minutes.
We show up and aren't allowed in the room ("Sorry charlie, you got the wrong info from someone") and it took 30 minutes.
At least he had earplugs and was pretty well sedated. They seem to love the sedatives over there. Ah, he's just a baby - let's dope him up! That'll make it easier for us to do our jobs! Whatever.
Shell and I put up a few requests today that I think have everyone scratching their heads. We asked for the head of the hospital to sit down with us and go through the (tragic) comedy of errors these folks continually put us through as well as a full care plan from all the docs involved in Mikey's care. It's kind of funny how everyone said how hard that would be! Can you imagine! Yes, your son doesn't have a plan, we won't make one and getting us all in the same room at the same time to discuss you? Come on now.
Apparently Doc 1 is only free on Tuesdays. Doc 2 is only free on Thursdays. Doc 3 and 4 are on vacation for a week and Doc 5 is switching services so another replacement Doc (5a?) that doesn't know Mikey at all will be coming in next week, so we can't schedule it until he shows up on Monday.
We came in specifically for rounds today and guess what? Our attending doc didn't show up, even though we specifically asked for him. We were told he'd be in during rounds and then didn't come.
So we're hoping for NEXT thursday to sit down and discuss what has to happen to get Mikey out of the joint. At least in prison you know when your parole hearing will be.
On some good notes, Shell and I are getting much more comfortable with suctioning the trach, feeding him on the g-tube and basically caring for him. And for all of you looking for nurses for us, we only need an LPN for trach work. No RN required. That /should/ make it easier to find an agency. I hope. For any of you with any leads on nurses PLEASE send them over to me at mikek at thinwires dot com. (That's anti-spammer lingo, of course - you put the symbols and dots where they belong;)
Speaking of nurses - we've experienced quite an upturn in the quality of nursing we've gotten. It seems that we've found a cadre of nurses now that are regularly attending to Mikey when they work and it seems as though they've all learned his signs pretty well. Thank goodness - I was starting to think I'd have pot luck forever. Joyce in particular has been awesome at training us at every little bell and whistle on the boy. I am really comfortable now with caring for him - at least how to, maybe not the intensity - on my own now. I could clean his trach, change the collar, suction him, even help him come back from an episode where he desaturates a little bit.
