Tales of the Toot

'Cuz special needs kids need special mamas!

There are good days… November 29, 2008

Filed under: AHUS,Atypical HUS,kidney failure in children — christycross77 @ 8:36 pm

…and today feels like one so far. Aiden is STILL in the best of spirits! He has ran all over this ICU and insists on pushing the buttons to open the automatic doors himself. All the nurses play chase and hide and seek with him and today we got permission to take him off the ICU to the pediatric playroom upstairs a couple times a day! YAY!

On the medical front, we still have not received any results back from Iowa. I think I told y’all in the last post that there are only 3-4 places in the world that can test to see which competent is faulty in the atypical HUS disease process….Iowa is the only one in the U.S. and is where Aiden’s docs sent his blood. We are hoping to hear something next week. We skipped pharesis on Thursday and picked it back up yesterday and will have it again today. So far we cannot tell that it is working and that was really putting us in a bad mood. His kidney function labs are up a little bit today and he’s having to have blood transfusions about every other day. These are things that the plasma exchange is supposed to help fix….(the plasma exchange takes out Aiden’s plasma and replaces it with donated plasma that should have normal plasma proteins, not the faulty ones that Aiden’s body makes) Dr. Quan (Aiden’s pedi. nephrologist) is out for the weekend so one of his associates who works at Cooks Childrens in Fort Worth just came to check on Aiden. He has a patient with Atypical HUS and was able to give us some insight on what this could look like long term. He said that sometimes it takes a while to begin to see changes with the pharesis..but if/when we are able to get all of the faulty proteins replaced Aiden may go into a type of remission. His pattient only has plasma infusions (not even exchange! just infusions!) every couple of weeks and does fine! Again, that all depends on the type of competent that is faulty in Aiden because there are better and worse scenarios depending on that, but just to know that is a possibility lifts our spirits in the midst of talk about kidney and liver transplants and life long weekly therapy. Don’t get me wrong, we’ll do whatever it takes but this gives me something to hope for.

This is all starting to feel like a run-on sentence…I’m sorry…just spewing thoughts onto the screen…

I’ve had a few questions about HUS and wanted to clarify. Last year they thought Aiden had HUS that was diarrhea associated…that’s usually caused by ecoli or some other type of bacteria…if you remember Aiden tested negative for EVERYTHING…this type of HUS is NOT associated with diarrhea or ecoli…it’s genetic, in the DNA. When the immune system is stimulated it just sets things in motion and his body kind of overreacts and beats up the bad stuff AS well AS the good stuff (blood cells, kidneys, etc) Hope that helps…I know it is confusing. If you google “atypical HUS” it gives you some good info, but it’s VERY hard to muddle through all of the terminology.

Please keep praying for my baby boy. I appreciate you all.

Love,
Christy, David and Aiden

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