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, December 20, 2011
Merry Christmas and Happy Hannukah!
Since the last update, Bo's line has required several applications of alteplace (TpA), and finally an ethanol lock (0.5cc 70% ethanol instilled for 4 hours, and subsequently drawn out) to clear what appeared to be an occlusion caused by his lipid. My theory is that the fibrin (gunky protein that is part of the clotting factors in your blood) formed a hairy network in and around the end of his line, and that the lipids stuck to them causing a 2-ingredient clot, requiring two anti-clotting procedures. Somewhere in there, his line broke (due to the occlusion and repeatedly built up pressure) and the surgeon was able to splice a new end neatly, and without much ado.
Baby Ahn is toddling and pointing. She continues to appear typical, including her language (resistant, as she prefers sign language, pointing, and general brattiness). She has started to use her words with prompting, started potty training, and reading.
I still don't understand why Omegaven hasn't been approved by the FDA. The company that makes it actually has taken some leadership of this, but apparently, not significantly more than before.
There have been days when I wondered what I would be doing if Bo was not here. I wonder when and what I should say to Bo when he asks about his line. He asked me when Ahn was getting hers. I explained that she was not going to get one. I had to choke back tears during this exchange. It made me wonder what I should say to Ahn, when things do not go as planned for Bo. I speculate about all the ways they will become broken, and all the ways I can prevent that from happening.
In some ways, it is a relief to think that we will bear the suffering of the world long after he has gone, and he won't ever have to face pain and death without me. But obviously, there is little comfort in any of those scenarios. So for today, I'll pursue all those things imagined in the "after" meditation, so Bo can see, in THIS life, how much his endurance has inspired me.
PS I don't know why, but none of my paragraph breaks are showing up and I'm too lazy to troubleshoot this right now.
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