In My Shoes: For Real?

Tuesday, June 9, 2009

For Real?

You know, some days are so much harder than others. We got a call today saying our insurance met to review the denial from the second transplant center and they aren't going to fight it. No surprise here, however, there was a pediatric liver doctor on the panel and he started questioning things about Fiona. He wanted all the records pulled about her liver bypass (kasai) so he could review them because he is questioning why they even did the kasai. Well all her records from her infancy were archived years ago and are probably destroyed. I have a few of the original NICU records that I will send them. Just too crazy to even think about. Fiona and I are in a tailspin right now. I guess our biggest question is does she have the right diagnosis? What is wrong with her if it isn't liver? Someone needs to figure this out.....NOW! The only words I can use to describe today are complete frustration and anger. Fiona has a wonderful team of doctors working hard to help her and then something happens and the bottom falls outs. I guess in the long run nothing is different today than yesterday but it sure is hard to hear these conversations sometimes. Frustration!

On the good news front, her EKG today was much improved. Since giving her extra potassium and magnesium all the chest pains and palpatations are gone! So some good things are happening.

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Biliary Atresia

Biliary atresia is a condition in which the ducts that carry bile from the liver to the gallbladder and small intestine are not normal. These ducts can be injured, blocked, or missing. When the ducts that carry bile out of the liver are closed, bile backs up and damages liver tissue. In time the liver can develop scarring or cirrhosis. The gallbladder may also be abnormal or missing. The cause of Biliary Atresia is unknown. It occurs in one infant in every 15,000 live births. It is a serious disease which requires immediate surgical and medical treatment.

Arteriovenous Malformations AVMS

I have been diagnosed with AVMS in my lungs do to my liver disease. These have caused me to have 2 lung bleeds which were very scary. I still have more AVMS and they are causing me breathing problems. Below is an explanation of what the AVMs are and a picture of what is happening in my lungs.

Arteries and veins are part of the human cardiovascular system. Normally, the arteries in the vascular system carry oxygen-rich blood at a relatively high pressure. Structurally, arteries divide and sub-divide repeatedly, eventually forming a sponge-like capillary bed. Blood moves through the capillaries, giving up oxygen and taking up waste products from the surrounding cells. Capillaries successively join together, one upon the other, to form the veins that carry blood away at a relatively low pressure. The heart acts to pump blood from the low pressure veins to the high pressure arteries.
If the capillary bed is thought of as a sponge, then an AVM is the rough equivalent of jamming a tangle of flexible soda straws from artery to vein through that sponge. On arteriogram films AVM formation often resemble a tangle of spaghetti noodles. This tangle of blood vessels forms a relatively direct connection between high pressure arteries and low pressure veins.
The result is a collection of blood vessels with abnormal connections and no capillaries. This collection, often called a nidus, can be extremely fragile and prone to bleeding.