Deliciousness

The first thing I hear is, "ah la so mah!" as a small soft hand reaches over to turn my face to his. "I love you so much, too, Bo." What a way to start the day. Even with the rain. It doesn't seem so gloomy as luscious and delicious. I start my day in the green haze of bursting leaves and grass and rain, covered in the sweetness of my darling family. I can't wait to see the rest of the family in the afternoon, bursting with succulence.

Comfy!

Bo loves his new big boy bed. It is so comfy, he just passes out as soon as you get him in it. But the transition isn't quite complete, as he has been waking up once each night, and in light of the kidney situation, I haven't had the heart to insist on self-soothing. So there's usually a parent squeezed in with him upon waking each morning. I have not regretting springing on a super-good mattress at all these last 2 weeks. I wake up refreshed, even with a 2-year old draped across my head.

Busy Busy

Bo's big boy bed gets installed tomorrow. Woohoo! AND just saw an effective gene therapy http://www.nei.nih.gov/lca/blindness.asp Maybe, maybe this will get developed and available for Bo and other single-gene diseases in the next 10 years?

I'm swamped with work through the end of October, so updates will be fewer and farther between.

Conclusion: Left Kidney Stone

So Dr. Doom wanted to see Bo as soon as we told him what was going on Tuesday night. Sorry to keep you all hanging. And we went up for a morning of hospital stuff Wednesday: UltraSound, X-ray and clinic with said Dr. Doom. Although he seems happiest issuing statements of Doom, Jose and I agree that he is probably the best dr Bo has, besides Dr. Puder and Gura (Omegaven team from Boston). Doom runs the pediatric nephrology, dialysis and transplant centers at DeVos, so he's used to complicated kids whose kidneys are part of a multi-system event.

Unfortunately, this doesn't change the fact that I always leave this clinic tearful and stressed out.

So Bo has a stone in his left kidney that had shrunk from winter through spring, but has since grown again. The plan is to attack it with an oral drug called allopuranol, despite his MID. Since we know the Versed, previcid, Tylenol and Motrin work orally, we're going to try this. And if it works (please, God!), then we can start addressing the calcium issues (always a risk for TPN-dependent kids).

They've increased the volume in his bag, and I'm not even going to ask if its temporary, or ask again about weaning hours. I realize now, that if he's stable at 20 hours, and he's a 20 hour guy, that's certainly better than being in pain and retching and not sleeping and the general misery that all represents.

So, that's life.

Sleep Deprivation is a Crime Against Humanity, pt 2

Well, the good news is that he didn't spike any fevers in the 72 hours after his line repair. The bad news is that he has been on nap-strike all week. At first we thought it was too much vacation time with both parents followed by both of us at work full days, then he started to have some pink in his diaper and patting himself saying, "peanut!"

Then I finally asked, "Does your peanut hurt?"

"Okay." Which is his way of saying yes.

So we're still monitoring for fever, will run some blood tests tomorrow, and run some extra fluid tonight. It could be those pesky stones that he's just now passing, or a UTI, or a (God forbid) line infection presenting like a UTI. Nephrology, pediatricians, home care nurses and pharmacy are all apprised of the situation. If we're lucky, it's one of the 1st 2 options. And once it is resolved, our good sleeper will return to us. But... I can't shake the sensation that a line break followed by "off" behavior cannot truly be a coincidence.

Send us good vibes. And more sleep, if you can! Above: sleeping on the plane to Oley. Note: plane sleeping is not good quality sleep. But I'll take it over what we've been getting this week.