It’s been a busy week, but a fantastic one. An “I’ve slept in four states in four nights” kind of week. BUT, we’re all together now, along with Mima and Nan, and enjoying some quiet, healthy, happy time at home.
Going back a few days:
On Sunday, I met J and K for a handoff of N. He spent the night with me near the hospital because he had an early start to the day on Monday. And because these things never pop up at a good time, I also had to get my oil changed.
As a preface to much of this, both boys will be getting G-tubes. I’ve mentioned that previously but can’t recall if I said it with certainty. After this episode with Landon, which we believe was caused by aspiration, it is a certainty, and will happen within the next month. Monday included an Upper GI for Nolan, as well as a surgery consult. L’s day was full of discharge checklist items, including ordering equipment, training on his new pump (he is on NJ feeds now so he gets a constant feed rather than bottles), and getting the all clear from a long list of Doctors. We had everything completed, approved, and set in place so we finally pulled away at 5:30.
I spent a couple of days away at training this week as well. It was wonderful to see some old friends and coworkers. And while I was gone, J, Mima, and Nan kept everything running smoothly.
L is doing fantastic. He is making new sounds, including some of the sweetest softest growls you’ve ever heard. He and N are right back to business with therapy on Wednesday, and so many smiles each day. We are thrilled to all be back together, and so proud of L’s comeback. It was very scary for a few days. In addition to worsening pneumonia, and a blood transfusion, the medical staff had some very serious conversations with us and we were not sure where things were headed. It’s hard to believe that was only two weeks ago. And now we’re here: