Surprisingly, things have been somewhat quiet in our world.
Sure, Jackson’s line wouldn’t draw back this morning and he’s been a little more ‘pukey’ than normal, but in our world, those are no big deal and, in general things, have been quiet.
Knock on some damn wood, everyone.
So, what has been going on? Jackson started with a new nursing company last week and we have been extremely happy. Our shifts have been covered, the nurses have been wonderful, and we’ve even been able to meet and train the nurses BEFORE they work with Jackson. It’s awesome! Sure, it’s still challenging having someone in your house 24 hours a day because it means I have to wear pants, but it’s getting easier and I’m finding myself more able to give up a little control and let the nurses help me throughout the day. Plus, I can go sans pants on the weekends when we don’t have a nurse in the home. Win-win.
Jackson gets rolling with PT tomorrow, but he’s been doing well at home on his own, too. He can hold his head up and push through his arms on tummy time, though it only lasts for a second because he acts like I’m trying to kill, flailing and screaming as much as he can. Because I’m a terrible person, I’ve taken advantage of these times as opportunities to put his Passy Muir, or speaking, valve on. He gets so much force out of those little lungs – we always knew they were strong – that I’ve actually been able to hear him cry a few times.
I love it. Him? Not so much.
Plus, Jackson has learned how to roll from his belly to his back, so horray for developmental milestones but boo for tummy time becoming more challenging. We’re working on using the boopy now as it protects his tubes and keeps him secure in one, unrollable spot.
As far as being a little extra pukey, it looks like Jackson is starting to officially get teeth. The nurse today mentioned she thought one was coming in and, as we know, along with teeth comes drool. The extra drool can ‘pool’ in Jackson’s mouth and throat, making him gag, cough, and spit up… right on my shirt at 4am because, of course. He does seem to be tolerating his feed advancements well – we’re up to 24mL/hour from 21 – and we’ll keep up the moves this week with another jump up on Thursday!
This week is Global Tracheostomy Tube Awareness week, so be sure to check out the page for fun facts. And, if you want, leave us a question you’ve maybe wondered about tracheostomies and kiddos like Jackson. There are no stupid questions – we love kind curiousity as it simply helps spread understanding and normalize our different!