We haven’t stopped squeezing every possible fun thing in, but it’s definitely starting to feel like summer is coming to an end. The weather is already changing. Kyle has pointed out a few trees that are starting to lose their deep green color. This is Kellen’s last week of summer school. He’ll have a week off and then starts the regular preschool year after Labor Day. Owen is 16 months old this week and (knock on wood) hasn’t been in the hospital for nearly FOUR months. Craziness – it’s like the universe is moving at warp speed. I guess it’s true time goes fast when you’re having fun. We’re having so much fun that I even had to do a weekend post, if you missed it and need a laugh, you’ll need to read about how I Failed the Swear Test.
I’ll let the pictures and video do most of the talking for the week, but wanted to give everyone a quick update from Owen’s Pulmonolgy visit last week. My prediction was wrong – she did wean his diuretics even though he recently had a course of prednisone. She said we should take advantage of the relative good health that Owen has been having and not just wean, but completely remove him from his diuretics! She also gave us direction that if the diuretic wean goes well that we can give Owen 1-2 hour breaks from Oxygen starting in 3 weeks and then wean from there as he tolerates! Dr. Laguna has given no timeline for when Owen will completely be off oxygen, but we’re happy to at least have a plan in place to give it some tries. She did warn that he’ll likely be on and off throughout the cold and flu season.
As you can guess from the diuretics move, she was really, really impressed with Owen. She commented on how good his skin looks (eczema and asthma can be related) and was really impressed with the way his breathing looks and sounds. Most important to her was his continued growth, his height gains tell her that he’s getting new lung tissue and assures her that he’s breathing comfortably enough that he still has energy to grow. Height growth is typically the number one problem with babies with sick lungs and it’s not an issue that Owen currently has. I like to joke that Owen’s height is a gift from all my gawky teenage years, but the truth is health trumps genetics and even though Owen does have tall parents, if he wasn’t healthy enough he wouldn’t be growing so well.
Next steps are to keep watching Owen while he’s off the diuretics. I’m learning that getting him up and moving is the key to helping him get rid of the fluids. Saturday night and Sunday morning he wasn’t doing all that great with it and then Sunday day and night he’s been great – exercise to start the day helped. When we do start taking breaks from the cannulas, at first breaks will be during waking hours, then we’ll work to include naps and night time will be the last to be weaned. Throughout weaning, his height and weight will be closely monitored. If he starts to fall off the growth curve, he will go back on oxygen. And then, once he’s completely off for a couple of weeks he will need to go in for an echocardiogram (sonogram of his heart) to make sure that the heart isn’t showing any signs of wear from working hard to breath. If his breathing comfort, height, weight and heart look good, then we’ll finally get life without tubes – at least when he’s not sick. It’s still a lot of steps, but it’s the first that we’ve ever had a discussion about life without oxygen, so it’s a really big first step.
Here are some pictures and videos of the rest of our the fun things we’ve done this week. We had a fun and busy weekend. Grandpa for dinner on Friday, the Zoo on Saturday and a BBQ with our dinner party friends on Sunday. The weather was perfect for lots of outdoor time.
This video was on the Facebook page last week, but if you didn’t see it, it’s sure to make you smile. Owen is learning the art of distraction. I try to feed him with the spoon and he decides it’s a good time to make me giggle.
Short and sweet video of Kellen helping with the lawn mowing.