Jack is doing fine in his new space in 2A. He still cannot coordinate his limbs well, though his legs are beginning to show more purposeful movements and less of the rigidity that we saw immediately following his neurosurgery. His hands are constantly exploring, but not in the determined, integrated manner of a typical 9-month old. Rather, it is much more like a two-month old’s movements. They are jerky, unschooled, but with a shadow of intent behind them. His hands open and shut, grabbing at wires, his trach, his G-tube button, everything. He can bring his hands to his mouth, and he chews on his fingers incessantly. He’s teething. On top of everything else, he’s teething!
His fevers have lessened a bit, and so yesterday, PT, OT, and speech therapists all visited. Jack seems to get the most out of PT at this point. He had the chance to sit up with some support and he was even rolled onto his belly for a while. It’s hard to see him from that angle. His poor little head is so full of sutures. It’s a reminder of what he’s been through this month, and also of how far he’s already come.
John and I started our training last night. We learned to suction Jack’s trach and how to “bag him” with a manual resuscitator in order to give him oxygen. I’m not very good at bagging. I’m kind of uncoordinated. John picked it up like he was born to do it, of course. we have also both had hands-on experience with general trach care by helping our wonderful nurses Holly and Kelly to clean the stoma and change the trach ties that hold the apparatus in place. John will be coming in tonight to assist with his first trach change, in which he will help to switch out the actual apparatus.
I have found that suctioning and bagging isn’t too bad. Jack is very used to these procedures by now. When he first had to be suctioned, I had to leave the room and stand in the hallway, as I found it so upsetting. Now, I’m doing it myself without much anxiety at all. What a difference a month of being in the emotional blender makes! I admit I’m pretty nervous about changing a trach, but not nearly as nervous as I am about going back to work while Jack is still in the hospital full time.
That will be the next hurdle for us. That, and interviewing nursing companies for his daily care nurses at home, finding a medical supply delivery company, negotiating with insurance and figuring out child care for Sam in the mean time. It’s going to be a busy week! But all of those logistics are a welcome step on the road. As I’ve written in the past, we have no way of knowing what Jack will be able to do in six months, a year, ten years, so I find this picture helpful in thinking of my own immediate goal for Jack. Let’s get these boys back together again! They have so much that they can learn from one another.