Thursday, August 13, 2015

A 23 weeker success story.

On a board somewhere a mom asked for 23 weeker success stories. For a bit I questioned what constituted "success" since there's no doubt that prematurity will impact my son in small ways for a long time, but then again, if three years ago I could have seen what I see now, I would have cried tears of joy. My son IS a success.

He is still medically complex. We've been chasing down genetic reasons for our son's kidney conditions. We've added a few more symptoms, treated those symptoms, ended up with electrolyte imbalances that have landed us in the ER and hospital (and first ambulance ride) and adjusted medicines again.

We're still working out what's going on, so I'll keep this brief, but it's such a relief (and so odd) that the thing that makes him medically complex is not a result of his severe prematurity.

To go down the list from head to toe:
PVL - that "life long disability" we talked about before -- mild, and last head scan showed ventricle size to be high end of normal instead of mildly enlarged. Doesn't seem to be holding him back much at all. We've now graduated from neurology and neurosurgery. They don't need to see us any more. Ever.
Retinopathy of prematurity - We've got a kid that's quite nearsighted, and becoming more nearsighted with every growth spurt. But his eyes still correct to 20/20 with glasses, so this isn't holding him back. He's at risk for eye issues down the road, but this just means we need to keep up with his eye appointments.
Chronic lung disease - a puff on an inhaler twice a day and occasional administration of albuterol and he's good to go. We see pulminology about once or twice a year tops.
Kidneys - this is the biggy. The list of things wrong with these organs is long, but all seems to stem from one genetic condition. Nephrocalcinosis, mild (and quickly disappearing) hydronephrosis, distal tubular acidosis, polyuria / polydypsia, and associated physical delays from a body that hasn't managed electrolyte imbalances well for three years... yep. This is the one we're still trying to figure out how to control. It's impacted eating (as he gets nauseated now from potassium and sodium levels being off -- and when he was younger it impacted his nursing as he was chronically tachypnic) and that impacts speech. There's a chance hearing has been compromised as well. We'll check that out next week. He's failure to thrive still and needs a g-tube to administer some (but not all) of his food.

And that's it. He walks, he runs, he talks, he has a fantastic sense of humor, and his small stature and glasses just gives him more "OOOOOH!!! He is SOOOO adorable! That kid is so cute!" everywhere we go. It's almost an involuntary response on the college campuses we frequent.

Yes, success. Yes, the long road was worth it. There was a light at the end of the tunnel.