Thursday, August 24, 2017

This moment

The bag of urine sits at the end of his bed in the PICU. It's connected to the tube that flows up to the catheter inserted last night while I was at home and my husband was here.

The thin foam pads are installed on his forehead and cheeks to stop skin breakdown from the ill-fitted bi-pap mask. The fourth one we've tried in the three days we've been here.

The bi-pap is one reason why we are here in the PICU and not the regular ward, recovering. The two viruses and bacterial infection attacking his lungs is another.

Just three days ago we were baseline. Suctioning occasionally to clear the harmless mucus that he coughs up regularly. But Tuesday this sickness came on with a vengeance. O2 levels in the high seventies, wheezing, grunting because he couldn't get a full breath, fever. Eight hours was enough. We had reached our maximum output of homecare.

I called the ambulance mostly so I could get a break and have the professionals care for him until he recovered. I expected the same treatment we'd received years prior when he'd been in for pneumonia. This time was different. The Oxygen mask wasn't enough. The deep suction wasn't enough. The high-flow O2 contraption wasn't enough. The bi-pap is sustaining him, pushing his breath a little further in and a little further out. His body is tired. Tired of all the bullshit and the struggle. Everyone needs a little help sometimes, right?

The bi-pap gets us a free pass to the PICU along with his other "helper robots" named Hill-Rom The Vest and Hill-Rom Vital Cough, plus Covidien the Feeding Pump and Alaris PC the IV infuser.

I have imagined moments where Dermot would be here, all hooked up to tubes and needles and catheters and breathing machines, but I never really thought about what it would do to me as his mother. Would I collapse and fall to pieces? Would I be a bundle of anxiety picking off my fingernails one by one? Would I rise to the occasion and be bad ass? Or would I just keep swimming? Keep going, keep showing up for my boy, keep sleeping by his side and asking the nurses what they're doing and why, keep loving my other boys and keeping things "normal" for them?

Things happen fast when you have a boy with a fragile medical condition. You don't know what will happen or when things will get better. You just have to keep showing up. Every fucking day. Because there isn't anyone else who knows him better, or loves him as much or appreciates what his struggle has taught you about being present and feeling your pain as it comes.

We are in the Pediatric Intensive Care Unit. There's a cautiously optimistic doctor that thinks Dermot will recover to his baseline and there's a team of healthcare professionals sitting right outside in the hall to ensure that he comes home with us as soon as possible. I'm here three feet away listening to his breathing machine go in and out typing on my laptop so I can get this moment down on paper (so to speak). I don't ever want to forget this moment.

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