Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
I told my friend who is going through the rough patch that I had a hole blown into my heart a few years ago. And just when I think it's healing a surprising reality snags it back open and just that little bit more. The world through this window is full of magic, miracles and angels. I want him to look through the hole in his heart and see the all the angels with holes in their hearts surrounding us, too. Magic doesn't just fly into your heart. Windows into other worlds don't just open to your eyes. The magic winds that brought our friend back to us blew a hole in his heart, too. It is the only thing I am ever greedy for anymore.
Our house today saw: mother in law, contractor, appliance guy, 2 teachers, 1 new nurse, father in law, neighbor, us. Too many people, not enough napping = early bedtime. Aside from no-nap, Bo was in high spirits.
The best news possible: the break is expected to heal like any 2 y.o, and is not expected to cause any problems with his growth; and we are accelerating our plans to start Bo on the Pamindronate (bisphosphonate infusion that will drive Calcium into the bones) by a couple weeks. The initial acute pain is subsiding and STF is getting inundated with hours of Thomas and Friends. I never thought I'd sit my kid in front of the TV for hours of undisputed entertainment. But then, I never thought watching him eat a cheese puff would bring me to tears of joy.
I can do nothing but surrender to the strange, joyful and unpredictable blur that is Now.
I worked the phones today, calling: nephrology no less than half a dozen times, orthopedic surgery 2x, GI 2x, primary insurance, secondary insurance 3x, infusion company, nursing company 5x, kindermusik teacher, music together teacher, children's boston billing, appliance guys for dishwasher and fridge, salon for hair appt, Bo's godfather for update, my parents, my sister and returning other calls. These are 2 of a 3 part series.
we see the "real doctor" tomorrow, as we only saw his resident in the ER on Saturday.
You heard it right. Fractured both bones below the knee. Cast from above the knee to toe. Hopefully get into the ortho's Monday and have a plan from there.
Wrastling with Tio from our trip to Chicago in July.
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.
