I update my family every day on how Jackson is doing. A quick text in the morning or afternoon after rounds to recap how his night was and how his day has been and what their plans are for him. When he was first born, I tried updating everyone individually and finally broke down one day, in tears, that it was just too many text messages and too many questions and I couldn’t handle it. Everyone meant well – they were concerned and wanted to know how they could help – but the extra work was creating stress where there didn’t need to be any. So, Katie suggested a group text and here we are today, over 100 days inpatient and the message is still going strong.
I have never been one to update my Facebook page with this type of information, though. I didn’t think anyone really cared to hear the ins and outs of his day outside of my immediate family. Not that they didn’t care about Jackson, but there are weeks on end when there are truly no changes and life is, for lack of a better word, boring (in our world, that’s a good thing).
Only recently did I think it may be nice to keep a more running journal of the more medical side of Jackson. The wires and beeps and drips side instead of the smiles and coos and kicks side. Jackson is made up of both, and if I’m going to share one, sometimes I feel like I need to share the other.
So, after 100+ days inside, that’s what I plan to do. Maybe not everyday, maybe not every detail. But, I’ll share what I can and what I want and what I think he would want me to share. Hopefully, these updates can help make the photos a little more meaningful and the information a little easier to understand.
So without further ado, here goes nothing.
If there is anything constant with Jackson, it’s change. Today was supposed to be a big day. The doctors were looking at extubating him, or pulling out his breathing tube, to give him one more shot at breathing on his own. Jackson was born with Pierre Robin Sequence, a condition that makes it hard for him to breathe, so there is a possibility he will be coming home with a tracheostomy.
His heart surgery was about two weeks ago and he’s healing up well – tolerating his feeding schedule and working on weaning himself off the massive doses of Ativan and Methadone he requires. His team last week thought he was ready – ready to go, ready to try, ready to give it a shot. So, we prepped for Tuesday morning, this morning, as the big day.
Selfishly, I was really looking forward to it. Because of his Pierre Robin Sequence, it can be hard to get a breathing tube in place safely- he has a ‘critical airway’, as they call it. That means we have to be very careful when we turn him or move him in bed, making sure he is always attached to his ventilator and not at risk of losing connection or, worse, pulling out the tube. We’ve been lucky – he hasn’t had any issues with his tube since he was intubated, requiring only minor tweaks up and down after procedures.
It also means we don’t get to hold him. In the last 10 weeks, I have only held him once, and that took three nurses, one respiratory technician, two hours, and an act of Congress. He was also sedated so he didn’t move around too much and interacted even less. Still, I was able to hold him and it was wonderful.
But that’s okay. We’ll wait.
He’ll wait until next week for his big day, giving him a little more time to grow and eat and get used to his lungs again. I’ll wait, too, counting down the days and looking forward to holding him again, for the first time in a long time.