Parker got to come home on Friday night. My little man was so excited to be leaving the hospital! We were waiting in the hospital lobby for Paul to pull the van around and pick us up and Parker was giggling so loud that I (and everyone else in the lobby) was able to hear him laugh around his trach. It was so great!! I think he was still full of his "happy medicine" so that was part of the excitement but it was nice to see nonetheless.
They decided to stop Parker's IV steroids and IV antibiotics on Thursday. I was very concerned with the side effects the meds were causing and we weren't really sure which one of the meds or a combination of the them were causing the issues. He was having seizure like symptoms (more pronounced eye shaking and extremity twitching), he was really out of it, and had pretty terrible diarrhea. They decided he had been on the IV meds for long enough. The Doctors made some changes so he could be on meds that can be given through his g-button and inhaled with a nebulizer. By Friday, most of the concerning side effects had passed and the Doctor's were very pleased with his progress. They said we could continue with the regimen at home since we have all the equipment available.
His medication and treatment schedule at home is a little overwhelming right now. He gets 16 doses of scheduled medication and treatments during the day. He also has a pretty good list of PRN (as needed) medication on top of that. I had to create a very detailed medication schedule to keep us and the nurses on track. So far it's all going well. Parker didn't even need oxygen on Friday night but has needed a bit since then. He wasn't really wanting to sleep for the first couple of days but I'm guessing that was because the high power medications were still in his system. He's doing better with all of that now and is back to his giggly, smiley, playful, cuddly self.
When we got home on Friday, Alexa seemed to be very excited to see us. We got lots of hugs and kisses. It meant the world to me and I was so glad to be home. I was so far beyond tired by Friday night and Paul could tell. He let me sleep in until 1:00pm on Saturday and I needed it. I'm quite sure I got more sleep in that one night than I had got all week in the hospital.
My mission right now is to try and get our insurance company to cover Home Health Care therapy so I don't have to take Parker to Out Patient therapy one time a week. I'm sure that playing with the same equipment and toys as a bunch of other sick kids during cold and flu season isn't a good idea. Our insurance says Parker needs to be "homebound" to receive in-home therapy and I'm trying to convince them that he should qualify. Wish me luck.
I do want to say a BIG THANK YOU to all of you who prayed for Parker and our family over this past week or so. Parker worked through this illness really fast and this whole thing could've turned out a lot worse and I attribute that to all of you who prayed. So, thank you and I can't begin to tell you how much that means to us!!