Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.
Thursday, March 10, 2011
GB Shunt?
Okay hydro parents - ever heard of one? Nope....me neither. Marissa is simply not tolerating her excess abdominal fluid. She didn't tolerate it previously when she had VP shunts which is why her neurosurgeon converted her to a VA shunt. She did awesome with it for 10 glorious months and then it failed in December. During that surgery, they couldn't get the distal catheter placed back into her heart and trying resulted in an emergent procedure with subsequent significant blood loss. It made everyone pretty darn nervous. Two short weeks later, she developed a clot. That made everyone even more nervous. The decision was made to convert her shunts back to VP shunts. She never fully recovered from that surgery and just hasn't been right since. Today, the determination by her neurosurgeon was that we need to come up with an alternate placement. Here's the thing - he doesn't want to put it back into her heart, too risky and not a good long-term solution; she is not a candidate for a pleural shunt because she is a former micro preemie with less than perfect lungs; the shunts cannot continue to drain into her abdomen; and she cannot go without shunts. That leaves us with a fairly uncommon site as a last resort - a gall bladder placement. Hmmmm......sounds interesting, and the resident's eyes lit up at the suggestion. There is a higher rate of infection (about 15%) and it certainly could fail, but the worst case scenario is loss of her gall bladder - not ideal, but not something that would be critical. She would be his third (and by far the youngest) patient to undergo such a procedure, but as it seems that we are kind of out of options, we are considering it. We will meet with the general surgeon who would assist with the placement to discuss the surgery and possible after effects next week Tuesday. Until then, we will continue to manage her comfort as best we can.
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3 comments:
Never heard of it. Marissa will certainly be a pioneer! I'm sure you are doing this - but I'd get a second, third, fourth, and fifth opinion. Who is the leader in this field?
I KNOW that by now you know everything about a GB shunt because you are such a great mommy advocate! I haven't ever heard of it - which doesn't mean much! Will be interested to follow along though!
Never heard of it either. I am sure you have done the research but another opinion will not hurt. I'm going to keep that tough little girl in my prayers. Keep us updated.
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