Bo had a horribly rough night last night due to the method of urine collection the nephrologist insisted on. But that's over, and hopefully we are in the home stretch of observation before discharge. He got a chance to play with a few other kids in the playroom, and will hopefully have another monster nap today to make up for his night of less than restful sleep.
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.
Monday, September 8, 2008
Sunday, September 7, 2008
Long Weekend Extended
Bo will have to remain in-patient at least till Wednesday. poor thing. Hopefully the next few days are for observation, only. Luckily, we were able to secure accommodations at the hospitality house here (like a Ronald McDonald House) through the end of the week. And we still have a few good friends in town, to help take the edge off.
Saturday, September 6, 2008
Don't Forget the Ativan
Last night I talked to Dr Doom and was in no mood to post. After a good night's sleep- no yacking!- and a shower, and talking to Dr Doom again this morning, I feel more confident that we may actually get home Monday. They are collecting urine from Bo today and tomorrow, and hopefully this data will generate more answers, rather than more questions.
Friday, September 5, 2008
Mystery Baby
Too high in the AM, normal by PM. They pulled labs as soon as Bo was admitted, and they were normal! But, his hemoglobin is a little low (from all the labs!) and they want to run some extra iron into him. Some people are allergic, so the first (and sometimes second) iron infusion is run in the hospital. The nurses monitor vitals every 15 minutes for the 1st 4 hours is the protocol. So we're not here for no reason. And we got to see his GI and are waiting to see his nephrologist and hemotologist. It would have been impossible to schedule all three in the same 2 days with such short notice, so I'll consider it a wash. Meantime, Bo and Jose are catching up on their sleep. What a way to spend your birthday, poor Jose.
Thursday, September 4, 2008
Wednesday, September 3, 2008
First Feldenkrais Lesson in Town
He was NOT into his Feldenkrais practitioner. He wasn't into his ABM practitioner either. But he wasn't scared of her. She is an older Chinese lady and bears a striking resemblance to me and my mom's side of the family. She did some accupressure for all of us, as well. Yum!
Above is my current desktop. Below, a cute picture before our current heatwave.
Tuesday, September 2, 2008
Quiet Weekend at Home!
Bo lost a smidge of weight and was acting a little funny this weekend, but not worrisome enough to send us to the Inn. His labs were drawn this morning and I am hoping hoping that we don't have to pack him up for another hospital visit.
Bo got to see 3 of 4 grandparents on Sunday. He was grinning from ear to ear. And Jose got to smoke a ton of meat. Yummmmm!
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