Long overdue Update

Not even sure where to start!!! So on Saturday I came straight from my friends house (we slept there after the funeral) to the hospital for Avery's discharge. I was so exhausted that I was not even thinking of what Avery needed to go home with (ie. Suction machine, O2, and ambu bag). Add to the fact that Avery was really not ready to go home. He had been still requiring frequent suctioning. With that being said, we got all packed into the car and did not even make it 10 blocks from the hospital before Avery was sounding horrible. I had to pull into the gas station and start doing chest pt to try to get him to cough up the secretions. The one thing I did have was an O2 sat monitor which was reading 82% (not good). I was panicked. Thank God Janessa was with me, bless her heart. I had to drive back to the hospital but needed her to do chest pt on him. What a big girl, she was able to get him to 88% which is better than 82% until I pulled into the hospital. Another blessing was a resident that had just discharged us happened to be walking into the hospital. She was able to assess him ( by that point he was up to 94%). I was hoping we could go straight up to the room he just left but nothing is never that easy, right! Instead, we had to go back through the ER for assessment and 6 hrs. later we were back in the same room he was previously in. Ugh!!!!

Since then he has been battling copious secretions, many desats and very frequent suctioning. One of the reason I think he is having more respiratory issues is bc they increased his baclofen significantly. While it has helped his spasms it has back fired respiratory wise :(. They have backed down on the med which has helped some but now he is having fevers, UGH :(. At this point I have no idea when he is going home. I just hope it's soon. I am tired and just want us to get back into our normal crazy home life.