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.
Tuesday, March 20, 2012
My turn
Bo was struggling with extreme thirst. We were worried that he was getting dehydrated. But, his labs turned out perfect. It was excruciating telling him that we would not give him any more water. For every sip he took, he spit up twice that. The risk of dehydration was getting very real. I cried, he cried. We were all very distressed. The pediatricians were nervous about changing anything. The GI was nervous because of his history of kidney stones. But finally, they agreed to let us administer a bolus of saline in the middle of the day. They took out 200cc from his TPN and shifted that volume into the day time bolus. And bingo, the thirst is no longer an issue, or it was back to normal.
He is growing taller. I had to let out the hems for several pairs of pants. And it amazed me.
I've been in bed all day with the stomach bug that Ahn had. Bo somehow didn't get it (thank God!), but the rest of us three were laid out. Although I have some time to update, I'm feeling so crummy myself that this is really as much as I can do.
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