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.
Saturday, January 24, 2009
Field Trip to the Hospital
Recent discovery: a line that infuses and draws beautifully can seize up and get 100% blocked in a matter of hours for no reason even while infusing. I flushed his line this morning at 6:30AM when his Omegaven infusion was complete. He climbed the stairs twice, we read half a dozen books, circled the house several times and had an hour worth of Feldenkrais lessons when his pump started beeping. Down stream occlusion, it said. Well, he and his teacher had been horsing around and his line was wrapped all around his body. I thought that was the problem. We untangled the two, but it kept beeping. Then we untaped his dressing thinking the line may have kinked up without us being able to see it. More beeping. I finally cut the lesson off half-way through and we went to the ER after calling the surgeon and the pediatrician. Unfortunately, the surgeon on call was not the one we prefer. He was rather conservative and was trying to brace us for an emergency broviac placement surgery. Luckily, the radiologist on call was more confident than the surgeon. He and his team were able to send a wire through the occlusion and determine that the tip of the line was still in his heart. And Bo was incredible, I got him to fall asleep in the radiology room and they put the guidewire in as he slept! What the surgeon reminded us what that what is very likely happening is that the tip of the line is still in the heart because the vein has grasped onto the line since it was placed when he was 3 weeks old (and barely 6lbs). Now that he is 19 months and 28 lbs, the fact that the tip of the line is where it was placed implies that the line that is inside his chest has stretched, like a rubberband. But since it is a just a stretchy tube, as the line has gotten stretched longer, it is getting stretched progressively thinner. There is a very good chance this will happen again without warning, or that it might even snap (!). So we are planning to schedule the placement of a new line very shortly. Yikes. And to be gentle with all our flushes until then.
Good thing we didn't have anything scheduled for out of town this weekend!
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2 comments:
yikes! (snap?!?) glad it worked out but not glad he still needs it replaced...
xo
holy moly! i'm flabbergasted and amazed at bo and you and jose. i love you guys!
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