We were discharged on Tuesday! I'm happy to be out of the hospital. It's hard to believe that Jacob was hospitalized through his day +100 mark for his first transplant last year. This experience has been so much better all around. Being out patient is certainly better, but it puts all the responsibility of Jacob's care on my shoulders. He takes 15 medications, two of which must go in every 8 hours, 8am, 4pm, and midnight. The midnight one has been waking him up even though it goes through his ng tube. He wakes up asking for food, so then we are up for a while. He wakes up at about 6:30 am because it is light outside. He still looks tired, but won't go back to sleep. I think we are both a little sleep deprived. He's on iv hydration for 10 hours at night and ng feeds for 5 hours during the day. Overall he's been a good sport about having to be hooked up to pumps for so much of the time. They are portable and fit nicely into a little backpack. We had a clinic visit yesterday and Jacob is doing really well! All of his blood work came back looking great. We are starting to taper him off one of his nausea meds because he hasn't thrown up since last Monday and we decreased his feeds because he has been eating really well. It looks like we will decrease his hydration next week because he is drinking a lot. He is also tapering off steroids and will be done with them around the beginning of July. So all in all, we are certainly moving in the right direction. We will repeat Jacob's chimerism test at day +56, to see if his graft is improving.
Here is my brave little warrior: