Situation Normal

We did go to Indiana (82 miles from here) to see the steam museum http://www.hesston.org/ on labor day. It was a hoot. Although I reinjured my ankle. Which made everyone mad. And tense. Because Bo was also not doing so great. Although he did enjoy the day.

At first I thought it was because we forgot his second dose of Previcid 2 days in a row. Then I thought maybe he had a site infection brewing. There have been a rash of them in the kids with central lines community, and his site was a little red, on top of his scratching at it. Or because of it? Then we thought maybe he was passing kidney stones? Well, either way, he started throwing up Sunday night (5x), and got worse Monday (every hour! Jose is a champ). Tuesday less but still too much for us to be happy (5x). Wednesday, he had thrown up 3x before lunch. I was on the horn with GI and nephrology. And we went up to GR for an ultrasound, additional blood serum testing (aluminum, uric acid, and I suspect calcium in a few different forms). His nurse dropped of some pee to the local hospital to run a urine study.

At this point, the most reasonable assumption is that it's kidney related. Either the allopuranol is working and the stone is moving around and hopefully getting smaller. Or it's not working and it's getting bigger. From the imaging perspective, they did not see any additional stones from August, nor growth from that big one in the left kidney. From the blood study, the uric acid level has decreased. We are still waiting to hear the results of the urine study, but 2 out of 3 leads us to believe that... wait for it... the orally administered allopuranol is working!! Even if its efficacy isn't as high as a typical kid, it sure beats new stones forming. Okay, so we wait for the urine studies to come back and go in to see the docs in a couple weeks.

Last night he only got up once. So I'm hoping we're on the tail end of this disturbance, and that the allopuranol can do its thing without additional pain. And to reward those of you waiting patiently for pix and updates, here are some vimeos. And I am still under the gun. So unless something significant changes, you may see new images, but not much else for at least a few weeks.

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.

Boring is Good. Therefore...

I'm getting double vision doing this task at work and I feel this vibration through my keyboard. Looking over my post-its pile, I see my cell blinking and shimmeying across my desk. Bother. I see Jose's number and sigh as I take off my headphones.

"What." I say flatly. It's just past 4. I told him it'd be between four and five, closer to five. "Yes. What is it?"

"What are you doing?" He asks.

"I'm winding down."

"When are you coming home?"

"Shortly. I said between 4 and 5."

"Well, Bo's line has a hole in it."

Shit. Can't think. Can't hear anything. Lights get brighter. Must be my eyes dilating. "I'm shutting down my machine. I'll be there shortly."

"Should we meet you at the ER or go to Leinwand's?" he asks as I'm googling Bronson Leinwand thinking, I can see myself handling his card and putting it down by the card catalog right by the door, even just last night. Why didn't I slip it into my handbag instead? Why? Was I feeling overly confident? Smug even?

"I'm calling them right now. I'll let you know what they decide." As I hang up, I shoot an email to my group, vaguely urgent, but no "!" or flag, poor punctuation, probably incoherent. Command the machine to shut down, and wait on hold for the surgeon to tell us where he will see us. I feel my eyes stinging. Where did those fucking tears come from. Come on, give me a break. It's close enough to the end of the day, why am I getting that look? Who cares. Get to the car. Get a file in case I need stuff to do. Movemovemove. Shit, forgot all those printouts for working at home...

The minute I step in the door, I get a wall of words. Why is she talking in Aramaic. Why aren't they in the car and turned around in the drive?

We bring our own sterile-packaged repair kit. Bo gets a dose of oral sedative (Versed). He gets loopy and plays with Tom Trains in the playroom on the peds floor as we wait for the surgeon to come back. No one wants him screaming the way he did last time. I explain that his broviac is broken and Dr. Downing is going to fix it.

"Dah Doew-nee."

"That's right, Dr. Downing."

We get home in time for some Thomas & Friends and a decent bedtime.

So... it goes.