We knew that Bo's IV feedings could lead to liver injury, we just weren't expecting it to happen so soon. We had been home a little more than a month, when his liver started to get hurt. You can see the jaundice in his skin and the whites of his eyes. Our visiting nurse said that she had some kids whose livers were so injured that they cried yellow tears. Thankfully Bo's liver has not been that badly injured. These pix were from mid-August (I'm trying to catch us up to present day, and I don't have that many pix from August with me).
Because of this, we accelerated our temporary move to Boston, where we were hoping to get an alternate lipid (sourced from fish instead of plants). The theory (contrary to popular belief) is that it is the plant-based lipids that cause the liver damage. But before we could see for ourselves, we had to duke it out with a) our insurance, b) Bo's secondary insurance (Michigan Children's Special Healthcare), and c) Bo's GI specialist. There were phone calls, faxes, visits, clinic appointments, emails and more phone calls. Meanwhile, Bo's liver is slowly disintegrating, and he is turning a brighter shade of yellow and the whites of his eyes are turning dull and green (at the corners).
2 comments:
Hello my sweets, sunnywave gave me the link, I am glad to have a space to come to and think of you. I was thrilled to get your post about guyton and literally smacked myself in the forehead.
Have the leaves turned in Boston yet? They are just starting to get gold around the edges here.
loving you all - N
Leaves are just starting to turn, but we have been blest with Indian Summer and a donated house by the beach. I promise to post pix of the fierce Atlantic in Autumn soon. We are planning our return now and hope to be home by month's end.
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