Tales of the Toot

'Cuz special needs kids need special mamas!

My sweet Aiden November 26, 2008

Filed under: AHUS,Atypical HUS,kidney failure in children — christycross77 @ 10:48 pm

First off, I want to thank everyone for their thoughts, prayers and words of encouragment. Although we are unable to respond to everyone or update everyday you will never know how much it means for us to know that everyone is pulling and praying for our little toot. Please don’t stop! We need these prayers now more than ever and I know they are what are helping to keep David and I sane. Some of this may be repeat info. for you but I wanted to give a clear picture of what has happened the last week and what is going on now.

Last Monday (Nov. 17th) we brought Aiden to Dallas for his routine 6 month checkup with his nephrologist. He looked great and they drew routine lab work and told us they would see us in 6 months for a recheck. On Wednesday we got word back that his lab results (his kidney function labs BUN, Creatinine) were abnormal. We took Aiden to the local ER that night to have them redrawn, hoping it was a fluke. When they came back abnormal again we were transported to Dallas to Medical City Children’s Hospital pediatrics so that he could have further testing by his pedi. nephrologist. During all of this Aiden was in GREAT spirits..happy, playing you would never know that anything was going on kidney-wise. His urine output continued to be normal. He did have the croupy-cough that refuses (even now) to go away but other than that he looked GREAT! They watched his labs Thursday and Friday and saw the BUN/Creatinine rising so decided to do surgery to put in a peritoneal dialysis catheter (like Aiden had last year) and do a kidney biopsy and place a central line all at the same time. After the surgery we were moved to the PICU because Aiden was having some arrythmias and they wanted to watch him over night. At that point his potassium levels were getting higher and they went ahead and started dialysis that night too. He did well on the dialysis for a little over 24 hours and they took him off to see how he’d do without it….

The biopsy showed that Aiden has chronic kidney injury and a rare form of HUS called atypical. It is so rare that there is not an excepted course of treatment, it is trial and error. Doctors have just been making headway in figuring out what this type of HUS does and how to treat it in the past 10 years. It is genetic and basically his immune system goes overboard when stimulated (illness vaccines) and attacks his kidney and blood cells as well as bacteria, etc. There are several different types of atypical HUS and some differences as far as treatment depending on the type. There are only a few places in the world that even know how to test for types of this and it is not an absolute given that they will be able to narrow it down at all. They test for this in Iowa, France and Italy. Aiden’s blood work has been sent to Iowa and we are waiting for results but I have no idea when to expect them.

In the meantime they are performing plasma exchange (plasma apharesis) on Aiden daily. The proteins that are abnormal in Aiden and responsible for the attacks on the kidneys and blood cells basically “live” in the plasma. They take Aiden’s plasma out and replace it with healthy FFP’s (fresh frozen plasma). The idea is that eventually we will rid his body of the bad proteins and replace them with good ones therefore stopping the attacks on his blood cells and kidneys. They are uncertain how long it will take to get him to a normal level or how often we will have to do apharesis to keep his levels normal. It will be an ongoing thing, it’s not a one time fix, but hopefully it will prevent him from having to be on chronic dialysis.

At some point in the future (a year? maybe longer?) Aiden will most probably have to have a kidney transplant. The damage to his kidneys is to great from this ongoing HUS. The doctors say that even though his labs were normal after the episode last year that there has always been a “smoldering” case of HUS in his body. After the transplant he will still have to do plasma apharesis (or whatever other kinds of treatments we find that may help) to keep his body from attacking his new kidney.

We are restarting dialysis tonight because he is a little fluid overloaded and they are putting him on apharesis in just a little bit. It takes about 3 hours ( the apharesis) so Ativan is our friend (for him, not us haha).

Of course we know and pray that God could change all of this and make our baby boy 100% healthy. But,we are prepared to fight and do whatever it takes to keep him at his healthiest and happiest no matter what. We ask for your prayers to help Aiden and us stay strong. He is beautiful and so much fun. The doctors and staff are all in love with him, of course. I have truly never received a greater joy or blessing that my little toot. He is worth any sacrifice. I only wish I could take his place.

We will update as often as we can. Thanks for the love and support.
David, Christy & Aiden

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