Damn Diaphragm

So Ford was re-intubated late last night after an unsuccessful 30-hour struggle. The initial thinking was that he just tired out, but that he was gaining ground and strength. The next time they tried to extubate him, after a brief reprieve, he would do even better, maybe make it all the way (we were told some kids need 3 to 4 tries).

But this morning the surgeon was concerned about Ford's difficulty and ordered an ultrasound of his diaphragm, to check for an unlikely post-op complication in which part, or all, of the giant muscle becomes paralyzed.

After waiting all morning for the results we finally met with one of the NICU fellows, who had not yet had a chance to consult in detail with the radiologist as to the results, but was able to generalize about what they saw. Turns out that half his diaphragm is not working, that it 'looks' like it's paralyzed, but not in the usual way that they see it. Apparently this can be caused by several things: post-operative swelling can constrict the muscle's ability to move, but this is generally a short-lived phenomenon and once the swelling goes down normal function returns. Ford isn't swollen anymore, he's two weeks post-op, so this probably isn't the problem. The other two problems involve damage to the nerves that feed it. They can be either temporarily numbed, or permanently cut. If they are just numbed from being poked during the surgery then they will recover - anywhere from a few weeks to a few months. But if they were cut then they won't recover at all and he will have to learn to cope with having only half a diaphragm.

If it turns out that the nerves were severed then there is a surgery they can perform to tack down the side of the muscle that is not longer working, which apparently helps him deal better with the problem (I'm a bit fuzzy on the exact details of this, we'll learn more over the next few days).

So the latest thinking is that this is why he is fighting so hard to breathe on his own. The good news: now that they have an idea as to what is wrong, the next time they try to extubate him (probably early next week) they will have a better strategy as to how to help him (apparently there is a kind of physio they perform to stimulate the area). The bad news: he might have suffered a pretty serious injury, which will set him back in his recovery and make things even more difficult for him in the long run. It also might mean another surgery.

On the plus side, Ford's catheter was removed a few days ago and that means one less tube in his body. It also means much more frequent diaper changes, something the nurses and Ford* are not as cheery about as we are. BUT... Christa, who surpasses me in so many ways, was first to step-up and offer to try her hand at changing, cleaning, and re-pampering little Sesame. Though I didn't witness the milestone myself, I was thrilled to hear about it after-the-fact and am thinking its the kind of routine I could easily settle into (her changing him while I'm out of the room).

Christa also got to hold him again - it's been over two weeks since she last got to snuggle and so, despite the threat of more trouble ahead, we really enjoyed our afternoon with Ford.

*Yesterday the nurse Bea, who was lovely in so many ways, and has undoubtedly been the most gentle and engaged and nurturing of all the nurses Ford's had, repeatedly pointed out that our little boy was "very intelligent, because he does not at all tolerate it if you do not change his diaper right away." While I was tickled pink at the thought of someone else acknowledging how brilliant our baby is (because he is obviously the smartest baby in the world), I am a bit reluctant to use the 'How quickly do you get angry when left to stew in a dirty diaper Scale' as the prerequisite for a Mensa mind. Maybe I've set my standards a little too high.