Maybe we’ve figured it out?

Yesterday’s clinic visit was AWESOME.

He’s gained a half a kilo in a week. So much that everyone came to check to make sure he wasn’t puffy and swelling up. (because weight gain that’s just water retention would be caused by, as Dr. Jetton said “those last few nephrons that are actually working finally just giving up.”) But he’s not – he’s just finally GROWING. Yay!

AND? His poop is just normal breastfed baby poop. It’s yellow and runny and seedy and it even smells, not quite like a regular baby, but pretty close. It’s always been black or green and odd textured and just not right, which I’d attributed to medicine.

However, I think we might have just figured out the magic balance for him. MORE intake, and LESS protein. He’s currently on 1t of protein – a THIRD of what he was on just a month ago – and 805 cc of breastmilk per day. We’ll have to increase both as he continues to grow, but this is encouraging to me that maybe we’ve happened upon the magic formula for Keeping Teddy Off Dialysis – less protein, more intake.  (BUN is a byproduct of protein breakdown, but they want him to be on some protein to help with growth, but they were evidently pushing it too much.)

And can I say that I’m also happy that this success was largely MY doing? Yes, I’m extremely happy about that. I mean, I would have also been thrilled if it was all the doctors. But they were largely humoring me with trying the less protein/more milk plan for a week.

Other great news from our appointment:

– BUN stayed stable. (it rose by 2), Creatinine unchanged.

– Other kidney function markers stable.

– Hemoglobin 10.2 or something, which is the highest it’s ever been, and is approaching normal.


The only bad thing we discovered his his parathyroid hormone is still REALLY high. (214. Normal is 9-52) High PTH stimulates the body to release more calcium into the blood – meaning it pulls calcium from the bones. This is bad, clearly. He takes a medicine to counteract this, but despite continually increasing the dose, it’s still been a problem. We’re increasing again, and we’ll see what happens.


7 thoughts on “Maybe we’ve figured it out?

  1. Yay Teddy! Mama always knows best. Jack’s PTH went up to 1600. We just kept increasing calcitriol, and eventually it came down. It can take a while to find the right dose.

  2. Great to hear that the balance is better and he’s growing. I pray that this will continue.

    Uncle Steve

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