Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, January 28, 2016

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. The reason her ammonia level spikes is because this shunt is HUGE!!! Like, as big around as my thumb. It appears to be the same size as the IVC. That means roughly half of her blood doesn't get toxins filtered.
Unfortunately the problem is made more difficult by the fact she has two main vessels that run parallel to one another, appearing to be fused together.

This is not something they will be able to fix in the catheter lab. She will absolutely need surgery to fix it, and they said, "It is a surgery that is difficult on the body, but she will also feel much better." It will take several months for her body to adjust to the change in blood flow, increase in protein, in addition to just physically recovering from the surgery.

Then there is the large blockage (and the new vessels created because of it) on another part of the portal vein that must be addressed. They cannot see it well enough on the MRA that was done last week at the other hospital so she will need that repeated. It is very likely she is going to need two separate surgeries. One to fix the large portal shunt, let her body recover a bit, then go back in to address the blockage. At their meeting later this morning they will discuss how they want to proceed.

Lord God, only you know how this child survived 19 years with this. There is some reason, probably one we will never know, that you had us wait this long to find out. But doctors learn by experience, either theirs personally or the experience of other doctors. Angela's vascular malformation is exceedingly rare, with only a few documented cases. Doctors all over the world will be learning from our queen.


Julie Rolffs said...

So thankful you're getting some answers. I pray for your girl every time you post!

gps said...

Wow, just wow! Perhaps it waited this long so doctors could learn to diagnose and treat it?

Jill Jacobson said...

We will continue to lift her up in prayer. Thankful for answers and excited for her health and strength to return!

Cindy said...

Praying hard for you all. Hugs.

Cindy said...

Praying hard for you all. Hugs.