Closer to Home

Sorry for the long delay in posting--it's been very busy. We have been working with an agency to set up home nursing care for when Peter comes home, a day which is drawing ever closer.

Peter has been very happy in his new surroundings on the third floor, and so have the rest of us. Daniel's favorite feature is the big playroom.

Over the past week, we have worked hard on bottle feeding. He likes milk and he likes to suck, but after 3 months unable to indulge his nursing instinct, he just doesn't seem to be able to put the two together. This has made him rather dependent on the tube in his nose and finally the doctors decided that his progress to normal bottle feeding was too slow. Because he could not go home with a nose tube (which he would pull out every now and then, the rascal), they put in a so-called g/j tube today. This was, yes, another surgical procedure placing a double tube-inside-a-tube directly through his skin into his stomach, with a smaller extra tube running past his stomach into his intestines. This is fastened more securely than a nose tube and is said to be less irritating to the patient. Peter will be able to go home with this in place, so we can feed him through the stomach tube. At the same time, we will be able to keep training him on the bottle--every now and then he does catch on (and latch on) and we do hope we'll make more progress with the nose tube now out of his face and throat.

Peter was happy and awake when we left after his surgery today. He will stay in the PICU overnight for observation before returning to the 3rd floor tomorrow. Everyone still remembers us even in the fast-paced PICU and it was like being back in the old neighborhood.



By the way, we've updated the photo album on Picasa.