Monday, March 23, 2015
Today Macey was seen by the Lymphodema-Plastic Surgery Dr. at the University of Iowa Hospitals. Apparently he is one of those elusive butterflies we have been looking for. He is one out of five dr. in the US that does this special surgery but I am getting ahead of myself.
Macey is now diagnosed 99% sure with Lymphedema. It was NOT caused from the bacteria that was found earlier, it is not caused by a blockage or anything worse it is Primary Lymphedema or Congenital Lymphedema. Which means she was born with it. For whatever reason it decided to rear its head in September and she is at Stage 3 of the disease. There are five stages. The last two suck.
She is going back in two weeks for one full day of testing. It will show a map of her whole lymphatic system, with contrast etc. It will be a long day, but she is a real brave little girl. We adults need a few of her qualities....lets just say we are not as brave. Then two days later she will go back, and the Dr. will let her parents know if she needs a couple of months of special treatment or if they need to do surgery right away.
The surgery is called LVA for short. She is only the 2nd child he has ever seen. We don't really know anything yet about the length of the surgery till after all the tests, but basically I believe they will try to reroute her lymphatic system so it will work properly....the down side is because it is Primary and not caused from something you can take away, it will be something she will have to deal with the rest of her life.
The Dr. told her momma today there is not a lot known about Lymphedema yet but they are starting to learn more. It is a work still in progress.
Macey's mom has always had vascular/autoimmune problems even as a young girl, Kylei was born premature and now we wonder if it is all tied together. Most likely.
So we have our answer after searching since last September. Around Christmastime we started thinking that was what was going on, we just needed someone who went to medical school to tell us.
We are feeling lots of different emotions right now, we tell ourselves there are much worse things in the world, but when it comes to your child, grandchild it still hurts you.
And so we begin our journey......Stella Rose's Momma