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, August 3, 2009
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.
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3 comments:
sending lots and lots of good vibes and naptime mojo your way. also i donated blood today and thought of you guys :) xoxo
xo
xoxoxoxoxo love you guys
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