7/13 Update

Yesterday started really well. Patrick was happy and smiley and playing with all kinds of things he shouldn't. We began to make toys out of cereal boxes, syringes, face masks, and whatever else we could, and he was having a ball. He also got to meet one of our friends and a fellow UCC pastor. They had "guy time," and I got to talk with an adult who wasn't a medical professional. In the late afternoon, we got a little worried because his heart rate went back into the 170s and 180s for a while and then, even though his heart rate went back to the 140s, he got excessively diaphoretic. But, it went away, and he did well over night and all of today, so we're calling it a hiccup.

Today was a good day. They have optimized his sildenafil and enalapril and stopped his milrinone completely, and his heart rate still looks good--it was 126 when I checked on him before I left (he was sleeping). He's been ridiculously happy, playing with toys and feet, smiling, "talking," "singing," and bringing joy to everyone. I, on the other hand, ended up at the Receiving Hospital ER this morning for some abdominal pain (only because Detroit apparently doesn't believe in having an urgent care). I got a shot and some various meds along with a prescriptions for all three, and I was back at Patrick's side. I was relieved it seemed to be nothing and was reminded that the lifeguard is not allowed to drown. It was a pretty good reminder of the importance of self-care.

They have been compressing his feeds over 2 hours and he's been doing generally well, although he had a pretty large emesis at the 3:00pm feed. Tomorrow, they will stop his stomach medications to prepare for a pH probe on Tuesday. They may begin to wean him off the nitric, or they may wait another day. The nurse thought they probably could have started today, but that they were just taking things slow, so we'll wait to see what they say at morning rounds.

As always, we are grateful for everyone's support. Thanks for sharing this journey with us.