In My Shoes: Answers may be delayed

Monday, July 28, 2008

Answers may be delayed - Waiting is hard

MyHotComments

We are waiting to see if they can shift some other patients around so Fiona's MRA of her brain and lungs can be done this week. (The MRA shows where the arteries and veins are. This will help determine if there are other abnormalities suggesting a birth defect.) If that can't be done then she will have to presented at UCLA next week or when test results are completed. Just sitting here waiting for more calls. Seems like the other tests right now are all on Wednesday and Thursday.

Been taking time reading all the reports that were sent to UCLA and handed to us at the eval. Interesting.....there was an abnormal ECG, the CT scan results are interesting but knew most of the problems already. Can't make heads nor tails out of most of the cardiology reports...who do they write those for, aliens? That sure isn't written in English!

But from what I can see most of her lung problems are in the mid-section of the right lobe of the lung. Don't know what that means as far as surgically correcting anything. So we just wait for the "experts" and pray they have the guidance from above to make the very best decisions for Fiona.

Fiona, our Super Squirrel,

You are my hero. You strength is amazing and your heart pure gold. Thank you for being part of our lives. Our family would not be the same without you. Even though the road is tough to walk right now it is worth it. A lot of people are walking with you. You are never alone.

Move over Superman.....Fiona, you seriously could kick his butt and without the help of special effects. He would never be able to do what you have to do everyday. You are what a true hero is: strong, brave and incredibly wonderful.

Love ya,
MOM

MyHotComments

1 comment:

Unknown said...: I am one of Peggy's students. I think you are very brave to be going through all of this.
Keep your head up, The colors are beautiful!!

Sam; July 29, 2008 at 11:50 PM

Post a Comment

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.