I gave Danny a bath today.....and look at the curls, heehee. WOW ~ he's had curls before but never all these tight ones. He's so handsome!!Peacefully sleeping :)Well after rounds this morning...everyone on this floor new I was pissed!! The restarted Danny's seizure meds and boy what a difference already in his mood and spasticity. I hope this gives lil man some relief. I can't believe that his wasn't getting his MAJOR seizure med for 5 days, and even more I can't believe that the doctors didn't see why I was making a big deal...Seriously,Really? Now he seems to be alil over sedated as his system is trying to readjust to his levels of back on Keppra, then the increase in the daludid, and the increase in oral Baclofen. I've aske to decrease back down the daludid and baclofen as I'm hoping Danny is getting back to his baseline, at least with the seizure stuff. What a day!! I talked with GI about his intolerance to the feeds yet and their feeling is to fix the stone problem which is probably aiding in his intolerance. Instead of changing the GI around, fix the stone issues, to change the GI around or back again. I totally agree with that....now just to get Urology on board. Dr Durkee is on vacation so of course they are trying to pass the buck till he get back to do the surgery. BUT I'm not cool with waiting 2 weeks till they can go in again to try. TRY being the key word here, as the last ultrasound has shown the stint that they put in to "stretch" his ureter to have slid already down somewhat in the bladder, UGH! Really ~ Seriously? Can ANYTHING go text book lately. We'll see if we get anywhere with Urology tomorrow.
Avrianna is going to a sleep over tonight and she was really excited when I talked with her. YIPPEE! I'm so glad she is having a good time and not too upset about Danny and I being gone for so long. I think I am doing worse then she is :( .....then she is going to hang out with my mom and aunt shopping tomorrow. Yea ~ that will be all bad....can we say SPOILED, LOL
Thanks again bloggies for following our journey....and what a long one this is! I so appreciate your kind words and encouragement. Some days I don't think I would be able to make it without you guys!
The Special Needs Blogger Weekend Link-up: go!
11 hours ago