Island life

Island life is quiet and serene, which is exactly what we needed. No hustle, no bustle. We drove HARD to get down here to enjoy some sunshine before bad weather rolls in, and enjoy we did! ...more

The Car Wash

Angela doesn't have a diseased liver, she has a malformed liver vascular system. Her actual liver cells are (mostly) working fine. I've been trying to come up with an analogy to make it easier to understand ....more

Just about ready

Details are done. House sitter arranged, dogs accounted for, laundry done and house cleaned. We're ready to go.A quiet house on the beach in Georgia ....more

Angela's Liver

You liver people will understand this. I will try my best to explain for those who are trying to understand.First, here is what the liver vascular anatomy is supposed to look like. The IVC (thich blue vessel) runs kind of behind the liver, bringing blood back to the heart to be oxygenated ....more

Buying Time

I'm going to be very direct in this post. I don't know how else to be. I have no energy to be anything but direct.In 2008, when Angela was 11, she was granted a wish from Make A Wish ....more

Abernethy Type II Malformation - more

Yesterday I explained that Angela has Abernethy Type II Malformation. Today with another ultrasound we have a slightly more clear picture. Let me just say, I wish we were all stick people on the inside, because medicine would be so much easier.Angela has a large shunt (like a bypass) from her portal vein directly into the IVC ....more

Abernethy Tyle II Malformation

We're almost there. Almost to the point of a final decision what we're doing. If only she could have just one thing going on!1) She has Abernethy Type II Malformation - this is a malformation between the portal vein and IVC (the main artery through the body) which prevents blood from going into the liver to get filtered of toxins, like ammonia.2) Her Portal Vein inside the liver has a large blockage in the form of a clot ....more

Whats the plan, Stan?

Today they did nothing.Angela sat around all day while we waited to hear what "The plan" is for further testing. At rounds this morning they said they would be spending the day going over every stitch of her previous records and tests to determine the next step. Tonight when I came back to the hospital I paged the resident ....more

Its time for a change of scenery

We love Children's Hospital St. Paul . The staff has been nothing less than wonderful, the nurses caring and compassionate ....more

More and but not enough information

Words for today:Portal Hypertension - Increase in blood pressure in the veins within the liver, usually caused by a blockage.Portal Thrombosis - Blockage of the portal vein, usually by blood clot.Revascularization- Where the blood supply inside Angela's liver is not working correctly, she has revascularized into a "multitude" of new vessels. Some of you have known her long enough to remember she also has a revascularized area in her brain that for many years they classified as MoyaMoya Disease. After many more studies it was found the circle of Willis on the right side of her brain was not fully formed, and the left side had crossed over the mid-brain and had taken over the job ....more