That is all I have left before someone takes my sweet babe from my arms and whisks him out of sight to have surgery.
All along, our palliative care doctor told us that our decisions would evolve organically. Inwardly, I might have rolled my eyes a little at this statement. Decisions must be made, and they must be made by us, his parents. At least, that was my thinking at the time. But Dr Furigay assured us that James’s path would naturally diverge from whatever our “plan” was – and it is our job to follow his lead and let him make decisions.
And indeed, along the way, James has led us, and we have followed. Every decision we’ve made, every intervention we’ve made – they have led us to 5 beautiful months as his guardians. I have not a single regret.
And Dr Furigay was right. James has done this. He has shown us what he needs to thrive, and we have no choice but to go where he leads. We have struggled to honor him at every step. We have struggled to remember that the significance of his life is not measured in his time here with us, even though we would have it that way.
James is thriving. In spite of his trisomy, in spite of his heart defects, he is gaining weight, he is becoming more alert and interactive by the day. He has suffered 4 colds already, and he has weathered them brilliantly with only a little “extra” support at the hospital. And so we have approached the issue of a trach tube slowly and naturally, in keeping with James’s own course.
Here is why a trach is a good thing for James. He has been sick 4 times since he was released from the NICU. Once with rhino, once with corona, and twice with unknown (likely) viruses. Each time, he has handled the cold well for the first several days. Eventually however, the thickened mucus in his throat and sinuses leads to difficulty drawing in deep breaths and filling his lungs. His lungs then start to collapse, and eventually, he becomes unable to re-inflate them. His left cranial lung lobe is the worst for this. It is rarely inflated on xrays. His heart has to work harder, and he becomes fatigued rapidly.
He responds beautifully to increased positive airway pressure – i.e. pushing air down his trachea and into his lungs. We are doing this at home somewhat with his hybrid, high-pressure nasal cannula. When he’s healthy, this is sufficient. When he is sick, it is not.
The trach will allow us to give him a much higher level of support when he is sick. We will be able to keep his lungs from collapsing. We will be able to deeply suction his airways to keep mucus from accumulating. We can nebulize him in a less annoying way (instead of through his nose).
He is also having a gastrotomy tube placed. This is a feeding tube that goes directly into his stomach through his body wall. We will no longer have to feed him by nasal tube, and his face will be free of hardware. Back when we first got the diagnosis, I remember seeing other trisomy mothers posting about the excitement of seeing their babies with clear faces, and I didn’t quite get it. Now I do. I can’t wait for his sweet face to be free of tubes.
And of course, I am terrified. Even though the surgeries themselves are “routine,” James is anything but a routine baby. Part of me is afraid that he is never going to come home. I can’t let myself think too long about that possibility, but it’s always there, hovering in the back of my brain – a dark cloud of fear.
But worrying about tomorrow does nothing but ruin today. I plan on spending tomorrow and tomorrow night with my sweet baby boy, snuggling with him, kissing him, and telling him how loved he is in this world – how many people know his name, how many people are rooting for him. I will make those last hours before surgery count as if they have to count forever. Just in case they do.
We are all stardust.