Day +101: Life at home

Sam's temperament is pretty cheery most of the time. He has his moments--some of them long--but a lot of the time he is smiley and apparently delighted to be here. In the last week or 10 days he's started to coo and squeal, which never gets old for us. He loves his blankets, can't go for long without a pacifier, usually dislikes bath time, and rarely tolerates being awake and alone in a room.

Sam still has the broviac in his chest, and probably will as long as he gets blood drawn two or three times per week. Transfusions through the broviac (e.g., red blood cells) used to happen weekly, but they are rare now. 

A typical breakfast (and dinner) for Sam. The menu changes slightly as meds and doses are adjusted, but the overall quantity has been pretty constant since discharge. As Sam's immune system develops and he needs fewer prophylactics, we'll be able to discontinue several of these. He was recently weaned off of Lasix, a diuretic that has been depositing too much calcium in his kidneys, and oxycodone (opium-based pain reliever), which he no longer needed but which he'd been unable to kick several times before. We'll be most happy when he's weaned from steroids, which he's on this time suppress graft-versus-host disease. 

Sam's first taste of solid food. (Ratio of sweet potato in stomach to sweet potato on face and bib = approx. 10:1.) He still gets fed through the NG tube* overnight, but that is largely an artifact of the first days after discharge, when he wasn't eating enough (we used the tube to ensure that he got needed calories). He's eating really well now, but the tube is still essential as it's how we medicate him. Although he took meds by mouth over the summer w/o much argument, he's on too many right now for that. He's wised up and would not allow use to stick goo-filled syringes into his mouth 30 times a day.

Sam and me out for a walk. Of the many fabulous things about not being in the hospital, the ability to move around freely and show Sam the outside world ranks pretty high. He likes going for walks, and even a quick trip out into the yard is great way to soothe him. (Sam's hoodie comes courtesy of a good friend's mom.)

Sam can't roll over yet, but he's close. Thanks to spending half his life in a hospital bed (and taking huge quantities of steroids, which suppress bone and muscle growth), Sam is underdeveloped physically--he is literally off the growth charts for a baby his age, closer in size to a kid half his age. But he's getting lots of calories, Vitamin D for bone growth, and physical therapy. And he's still damned cute...

...even if the blissful days of odor-free bowel movements are so over. 

* One big downside to the NG tube: Sam has started to pull it out of his nose, as he did just a moment ago. It's not a huge deal to put it back in, but it's traumatic for him. And a bit disturbing when it comes out his mouth instead of going down his throat and into his stomach.