diaphragm plication redux

the longer we leave updating the blog, the harder it is to keep straight all the details of recent events, and the more daunting the task becomes. at least for me. nick's spare time this week is devoted to a new sculpture he's working on so, in his stead, i am updating lilsesame, though i prefer his writing over mine!

by end of day when nick wrote the most recent, somewhat bleak post, it seemed things were brightening. that afternoon, they discovered the cause of Ford's fever was in fact a urinary tract infection. they changed his antibiotics to gentamicin and it seemed to be very effective - he hasn't been febrile since.

meanwhile, the ballooning of his aorta seemed to have helped his breathing. two different people told us he could soon be off the high flow and we'd likely be back upstairs monday or tuesday.

however, they have not been able to wean the high flow and on wednesday they did an ultrasound of his diaphragm as the left side appeared to be moving again. it showed the plication he had on june 19 has somehow come undone. Dr. Human, cardiologist, called Dr. Ross, surgeon in Edmonton, for his thoughts on the matter. of the few times Edmonton has seen post-heart surgery diaphragm paralysis that needed plication, they have, a couple times, seen it come undone and need to be re-plicated. he suggested they do that for Ford.

thus, tomorrow, he is going to have that surgery. again.

the first time he had it, it very quickly made a huge difference in his breathing. we hope that will be the case again. tacking down the diaphragm means his left lung can fully expand, which, in turn, has been putting pressure on his heart. it also will affect his feeds too - while behaving paradoxically, his stomach is not in the right position.

if the surgery doesn't make enough of a difference for him, there was talk of moving up the Glen (part 2 of the 3 stage modification Ford's heart is en route for) from 6 months old, to 4 months. let's face it, Ford just isn't doing as well as anyone would hope. it's been 10 weeks since his Norwood (part 1) and the long-end of recovery time for every other HLHS baby is 8 weeks. statistically. Ford is doing his own thing, and we love him for it, but it's hard not to compare and feel like we should be home by now. indeed, it's what we were looking forward to 10 weeks ago.

BUT, the re-plication could do the trick and we could be home in 2 weeks and his Glen could still be a few months away. we shall see!

right now, as i type, he is being intubated. they want to optimize his lung function pre-surgery. while he was intubated last friday for the cath, his left lung, which has had some collapse, opened up fully. once extubated, it collapsed again. so for the next 24 hours he will breath as optimally as possible, which is good.

it is, however, very hard to know he is being intubated, and it'svery hard to see. it means he won't be able to make any noise and it will also make it very difficult to pick him up. he will be kept sedated as it is uncomfortable to be ventilated. it is short term - he should be extubated over the weekend. but it means he looks like he did when he was much more sick, and those recent memories are painful to revisit.

so the plan is: friday, surgery. saturday or sunday, extubated to high-flow. monday or tuesday, hopefully wean to low flow. by end of next week.... off the low flow and back upstairs? that will depend on how he responds to this diaphragm fix.