Saturday, November 29, 2008
There are good days...
...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
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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5 comments:
I am so glad you have more insight. We are praying for you everyday and will continue to do so until the toot comes home. We heart you!
Can you give us the hospital info so we can send stuff. :)
Keep the updates coming. I'm glad to hear he's in good spirits.
Clint and I worry about yall. Like I said before, if you need anything - don't hesitate to ask.
-K-
I'm glad Aiden is in good spirits. Keep the updates coming.
I hope you and David are keeping your sprits high also.
Randy and I think about ya'll everyday. Our thoughts and prayers are with you.
If you need anything at all please let us know.
Gina
The penguins and the jellybeans are always going to be here for you, too. We all continue to pray. (((HUGS)))
Amanda & Adam
(Myturnsoon)
Christy and David
We are glad to hear that little tootbug is in great spirits...We know that will keep you all uplifted as well..We have you on many prayer lists as well as we are praying daily too that all will get better. Please let us know if you need anything at all...And send the address of the hospital if you can.>We would love to get together a package for you all!
Love and prayers
Sunni, Jason and EmmaLou
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