Discharge was a circus today. We didn't actually walk through the door at home until around 8:30PM and I immediately had to get Ty's meds ready. Then I had to clean out the refrigerator of all the rotting groceries that I purchased over a week ago but never got to eat - so sad! One of my least favorite parts about returning home after a long stretch.
Ty was very excited to get home, but it was so late and he was soo tired, he actually asked if he could just go straight to bed. Within the last three or four hours he's been doing some strange neurological things, too, which has Lou and I feeling like our eyes are being held open with springs. It's just so nerve racking to see him with tics like yawning weird every 30 seconds, or opening his eyes wider than usual. We need to keep reminding ourselves that the MRI was clean yesterday (clean is such a beautiful word) and that we need to allow his brain to recover. Ty's brain is doing a lot of moving around and readjusting, so we need to be patient.
We just look at one another with such pain and anxiety. The whole last week was so incredibly exhausting on so many levels, today was complete chaos, and we just needed to come home and let out a deep sigh. That relief is being stolen from us as we watch Ty struggle to sleep. It's just so hard sometimes. I went upstairs and woke up Gavin for a few minutes just so I could hold him in his rocking chair. That was the only real moment of peace I had all day. Now I have to wait until at least 11:30 before I can give Ty his next dose of steroids, then I am going to sleep right next to him. I pray the rest of the night is filled with peace and quiet. I need to wake up for meds again around 4AM, but other than that I plan on sleeping as late as the boys will allow. Goodnight everyone. Sorry this wasn't a more cheerful post considering we are "home fwee!!" as Ty would say. Tomorrow will be a better day :)
XOXOXOXOXOXOXOXOXO. Have a great weekend.