Surgery update

Sam rocked his surgery on Thursday and is all about healing now. It was 8:10 a.m. when they scooped him out of my arms and walked him down the hall to the operating room. It's still one of my least favourite moments in the whole gig, that time of relinquishing him to the surgical nurse and watching him disappear.

It was 8:10 p.m. - exactly twelve hours later, weird, eh?! - when they wheeled Sam out of recovery and down to ICU. Chris and I were standing in the hallway vibrating when Sam came around the corner in his bed with his legion of pumps and monitors. I was pretty eager to see my baby. His doctors were fantastic at calling updates through to the waiting area, letting us know that he was doing great. But twelve hours is a long haul.

Dr. Brindle was extremely happy with how the surgery went. She came down to us before Sam did and gave us the low-down. Sam's diaphragm patch had multiple small tears in it and there were loops of colon squished up through the holes and into his chest. (This would certainly explain his recent constipation issues.)

The bowel was repositioned, the old torn patch removed, and a double patch used to close the diaphragm. Then the muscle graft was created using the large lattisimus dorsi muscle from Sam's back. The lattisimus muscle was detached at the top, just under his arm. They removed a piece of one of Sam's ribs to make space to pull the muscle through his ribcage and across his abdomen. The tip of the muscle that was at the shoulder was stitched to his existing (right) diaphragm. The phrenic (diaphragmatic) nerve was attached to the muscle so that the brain can tell his lattisimus to act like a diaphragm.

Voila! Sam now has a brand spankin' new diaphragm made out of his lattisimus dorsi muscle. It has its own blood flow. It will grow with him. And the nerve is attached so that - theoretically - the brain can communicate impulses to the muscle to make it contract and release like his own diaphragm. We won't know if that part actually works until down the road. But, even if it doesn't, this is still better than the patch repairs. Sam is unlikely to reherniate again with this repair. 

And can I just say how amazing this hospital and Sam's doctors are? Wow. Thank you, Dr. Mary Brindle, Dr. Rob Harrop, Dr. Frankie Fraulin, and Dr. Ruth Connor. They gave their whole day and a world of talents to our baby on Thursday. Wow again. Also, when do they eat and pee?

Some have asked why they bother to do patch repairs when this more organic and permanent repair is an option. The first part of the answer is that most diaphragmatic hernia babies don't need a repair of this magnitude. Some babies have enough of their own diaphragm that it can be pulled and stitched together without a patch. Others need only a small patch. These kids may still reherniate but it is less likely, less frequent, and easier to fix. Sam had virtually no left diaphragm and he still has a lot of growing to do. Chances are good that he will rupture a synthetic patch over and over again in the coming years. His most recent patch from the reherniation in October lasted him less than three months.

The second part of the answer is that the lattisimus dorsi flap repair is far too invasive a surgery to perform on a newborn. Sam could not have survived this surgery a year ago or probably even 3 months ago. Seeing how he is recovering from Thursday's 12 hour surgery confirms this for me.

Sam came into Thursday a happy, eating, sitting, playing, one-year old with heart and lungs that are strong enough to require no medications and no oxygen support. Now, at 36 hours post-op, things are really rough. First-Birthday-Sam is barely recognizable to me in the Sam laying in his ICU bed now. This morning I brought my laptop to the hospital and I pulled up the photos from Sam's first birthday last week. I showed them to his nurses and respiratory therapists; this is what our Sam looks like. This is who I want back. 

Sam is intubated, holding his saturations fine and triggering his own breaths but not strong enough overall to breathe on his own. That's okay - he needs to rest his new diaphragm so that he can heal. But he fights the tube and the ventilator - always has - and so there are extra sedation issues on top of the sedation and substantial pain management that he needs from the surgery itself. His epidural went interstitial within a few hours of coming back from surgery, even though they hoped to use it for several days. They worked with sedation for many hours yesterday and he was still agitated, grimacing, being a regular wild man. So they started giving him a paralytic to keep him still and calm. It is nasty seeing my baby paralyzed but it's better than seeing him thrashing, fighting, in pain.

All this is part of a bigger picture that isn't so pretty. He seems to have a complex set of recovery issues. And giving meds for one issue often creates another. All day yesterday, he had at least two and often nine or ten people in his room. Both intensivists stood in his room for a good chunk of the day, arms folded across their chests, trying to figure out whats and whys and hows. Sam's blood pressure is labile. His heart rate is high. There is fluid around his heart. His lungs sound good but then don't sound good. He's not peeing. He has a fever. He's terribly swollen. He's pale and his lips are dusky. More tests. More meds. Another IV tree.

All this while I sit outside the circle of people at his bedside, feeling that all-too-familiar helplessness. I chant in my head: This is not last year. This is not live or die. He's just recovering from a big-deal operation and nothing dangerous is actually happening. Everything is going to be okay. My logical brain is reasonably convinced. A few other parts of me are arguing.

I knew it wouldn't be like the patch repair in October, where he was tube-free, breathing, eating, and out of ICU at 24 hours post-op. But I didn't think it would be this bad. I've had to adjust my expectations. I've tried doing what I did last year - living just for this moment. But that didn't work so well because of the overwhelming suckery of this moment. So my new strategy this morning is to remind myself that this will all look sooo much better a week from now. I didn't know that this time last year. Sam is in great hands here, with the amazing, brilliant, talented ICU folks who love him. Everything is going to be okay.

And it's our Sam. Super Sam. He rocks.


Sam getting ready for surgery. Look at that sweet naked chest with the world's faintest scar from repair surgery #1 last February. You'd never guess that his innards are a hot mess.