A Good Week!

YAY!! It's been a great week for Aiden and for us too! First off, Aiden's bloodwork looked absolutely wonderful on Monday evening when we checked into the hospital. His blood count was actually in normal range--something I have NEVER seen, even before his diagnosis! His electrolytes looked great and his kidney function tests, while not normal, were an improvement from last week. Maybe pheresis twice per week is going to do the trick?! I'm praying for another great lab report when we check in this coming Monday. Aiden is running around having a great time UNcleaning the house as I desperately try to clean faster than he UNcleans...ha, guess who's winning that race?

Aiden and I are meeting with Sterling Grace owner, Deborah Harter tomorrow to make more plans for "Aiden's Cross" She has already completed the design and I cannot wait to see it! I am absolutely thrilled that she has not only agreed to do this but has taken it on whole-heartedly and is working through her many, many contacts to spread the awareness about Aiden and Atypical HUS. She is truly a God-send. More on that after our meeting tomorrow!

I am encouraged. For the past week and a half I've felt the peace of God finally return to me and I can see a change in David, too. I still don't understand the why's, but I truly believe that God has a plan. Thanks to whoever it was who prayed specifically for that "peace that passes understanding"--Ha, I know YOU are out there--just don't know which one of you it is. It is now our goal to not only live each day to the fullest and with Aiden-like zeal but to spread the word about Atypical HUS to all who will listen. Look out Oprah--here we come! ;)

A very special thanks to ALL of our wonderful friends and as always to Mimi! We have a wealth of love and support from great friends and it lifts us up to know you care.

Please continue to be in prayer for more good news for Aiden and for the "Aiden's Cross" project. Also--please say a special prayer for the family of Caden White (www.cadenwhite.com) and for the family of Mellissa Ybarra and specifically, Ian their sweet son.

Love to all,

Christy, David and Toot

Revolving Doors

..yep, that's what we feel like the hospital(s) are right now...just a revolving door for us. I haven't updated in a while because we've been on the go between hospitals so much. We spent last weekend in the local hospital because poor toot got a stomach bug and couldn't keep anything down. The dialysis pulls a certain amount of fluid whether there is any extra or not, so we were afraid of dehydration during dialysis without IV fluids. We literally checked out of the local hospital Monday at 9:30 a.m. went home to pack and were on the road by 11:30 headed to the hospital in Dallas where we were for pheresis until Wednesday. They have Aiden up to 2x per week on the pheresis now because his dr. didn't feel like once a week was enough. Basically we check in on Monday evening for lab work, stay the night and have pheresis Tuesday morning stay another night, have pheresis Wednesday morning and then are released and come home. I am so thankful for great friends supporting me through this and a few awesome family members. (THANKS JEN FOR NOT LETTING ME GO TO THE HOSPITAL ALONE THIS WEEK!!)

I'm unsure if the pheresis at 2x per week is changing anything or not. Basically because I don't feel like Aiden's lab work is being followed closely enough to know if there is a real difference. I am starting to think it's not a bad idea to seek a second opinion as far as treatment options are concerned. Aiden's Dr. is great, but it never hurts to have another brain to pick, especially with something that so little is known about.

Aiden's spirits are great and he is running around playing right now. He really is awesome. The only thing that really got him down was the stomach bug...poor baby felt so bad.

Still no results from Iowa...looks like they weren't kidding when they said three months...halfway there.

Great news to report! Aiden's Cross is a go!!! Deborah Harter, owner of Sterling Grace Jewelry is already working on the design. She is so very sweet and supportive of this idea and of the idea of increasing awareness of AHUS. She is truly awesome and I am honored to be able to work with her on this and so very happy that she has agree to do it! Thanks so much to you ALL for writing in and showing support for Aiden. I will keep you updated on the progress of Aiden's Cross!! :)

I will of course update on any news or changes of Aiden and plan on getting some recent pics up as soon as I have a spare minute.

Love y'all,

Christy, David and Aiden

Correction..oops

just a quick correction to yesterdays post...I said Aiden needed more dialysis and I meant to say he needed more pheresis! Dialysis is going well. Thanks so much for all the support for the "Aiden's Cross" idea. I contacted a local company today called Sterling Grace. www.sterlinggracejewelry.com to see if they would be interested in doing something like this. Fingers crossed!

Love y'all,

Christy, David and Toot

more hospital time on the horizon

Hope that everyone had a great Christmas. Mimi (David's Mom), Aiden and I are back in Dallas today for pheresis...it was SUPPOSED to be done at 1:30! ha..they didn't even start until after 4 and it is a 3 hour procedure and then a 2- 2.5 hour drive home and then of course we have to hook poor toot-bug up to 12 hours of dialysis. Not a fun day. Aiden's labs didn't look good today and Dr. Quan thinks we need more dialysis. He is moving us up to twice per week to see how that affects the labs. Aiden and I will be traveling back to Dallas next Monday for our dialysis appointment at Childrens and then back here (Medical City) to check in for Monday-Wednesday. He will get pheresis on Tuesday/Wednesday and then if all is well we will go home. He is scheduled for lab work on Friday to make sure his blood counts are stable enough to go through the weekend without a transfusion so say a special prayer for him for that and also that he remains infection free. Not looking forward to next week,but will do what it takes to make our little toot better.

On the bright side, Aiden made out like a little bandit for Christmas and can't decide which toy to play with...so he plays with one for about 60 seconds and then switches to another. He's really enjoying everything he got.

I have also met some awesome Moms here, that spend even more time here than me. It helps me keep some perspective when I hear their stories. Even though it feels like it, I know we are not alone..and we have it better than some. My heart goes out to these other sweet mamas that are doing what it takes for their little ones. Isn't that what it's all about?

I am thinking of approaching a local jewelry company about designing a necklace for Aiden...something in sterling silver that could be made and sold locally and maybe online with some procedes going to the Foundation for Children with Atypical HUS (which is the only foundation I've found that is helping fund research for his disease)...if anybody has any pointers or knows anyone that could help me with this please let me know. Here's what gave me the idea..

http://www.swedeatheart.com/product_info.php?cPath=21&products_id=101

One of the moms here where's one of these in support for her son and it got me to thinking...I was thinking (and brainstorming with Cheryl) and we thought "Aiden's Cross" would be awesome.....feedback is appreciated, I'm really serious about awareness and support for Aiden's condition. Every little bit helps, right?

Thanks for reading and for your prayers and support.

Love,
Christy, Toot and David

Christmas Eve

Just a quick post to let everyone know that the surgery went well when they finally got around to doing it. There was some mix-up with the insurance and they ended up cancelling us when we got here, then admitting us and adding us in as an emergency case...it was so stupid and they didn't even take Aiden into surgery until 10:15 last night. (which means he was NPO for 28 hours! poor baby!!) We were not happy campers but are so glad that the surgery went well. His new line is in place and they are starting pheresis now, so we will see if it looks like it will work better than the old catheter did. The pheresis will last about 3 hours and we have to finish his dialysis...(he didn't get put on until 2 this morning after all the delays)...so hopefully we will get discharged and be on our way home sometime around 3 today. Thanks so much for the prayers and support. I hope everyone has a very Merry Christmas tomorrow.

P.S.

...I was in a hurry earlier, but wanted to come back and add a VERY special shout-out to my cyber-bestie Apryl. Thanks so much for never being more than an IM away.MUAH.

Prayers for Aiden...surgery tomorrow..

Most of you know that we got to come home last Friday. Yay! It has been an adjustment with the dialysis at home but thanks to my wonderful MotherInLaw and great friends we are adjusting! Aiden is doing awesome and is so happy to be home. His urine output was great yesterday and last night..almost like normal! and his blood pressure is so good that I have been holding most of his blood pressure meds. We are still praying that his kidneys will recover and we will be done with dialysis!

Tomorrow we have to go back to Dallas for surgery. Aiden's central line that they use for the plasma pheresis isn't working so they are going to take it out and put in a new (and hopefully better) one. It should be a simple surgery but I ask for y'all to pray that all goes well. Assuming that it does he will have pheresis Tuesday evening or Wednesday morning and we should be home Wednesday late.

I appreciate all of the messages, well wishes, cards, money, gifts...etc. You guys are the best.

A special thanks to Chad and Cheryl for your love and support. We absolutely could NOT do this without y'all or Kathy (mom-in-law from Heaven!)

We love you all!

David, Christy and tha Toot!

Nightmares...

So, I had a nightmare last night....I won't go into the details except to say that it was horrible and in it my worst fears came true. The fear of it lingers with me today even though I know (and knew even as I was dreaming) that Aiden was okay. I could hear him breathing beside me as I was dreaming but the fear remains. It is always there now...under the surface...in the back of my mind. Maybe it has been there since last year or always but it was easier then to push it away, to ignore it. Now I can always feel it and I'm not sure what to do with it; How to make it go away; how to defeat it? Biblically and realistically I know that fear is not of God and I should give it no place in my mind, my heart, our lives...but how? Especially when I feel that I am so distant from Him right now. I don't know how or what to pray for anymore? I don't understand the why's or how's. I know it's cliche' but it's just not fair. Not to Aiden. He doesn't deserve this. Why can't I take it away and make it better for him? Isn't that what Mama is for? Someone once told me that when you can't pray, when you don't know how and when you are angry that it's okay. God understands. They said that it is then that others stand in the gap and pray for you, and you just trust that God knows your heart. I hope they are right. I am holding on to that right now.

what is today's date?

They all run together after a while. Sorry for the lack of updates. We moved to children's medical center of dallas last week and their wifi (among other things) sucks so I can't even get to my blog except from the blackberry. They moved us here strictly for dialysis training for home and we've been here since Wednesday evening and have gotten about 4 hours of training. We have to complete it, be checked off and have a home visit before we can be discharged and they are taking their sweet time... Needless to say we are annoyed. And for the record this hospital sucks and we wish we were back at medical city (if we have to be in a hospital,that is)looks like we are here for at least the rest of this week. From the looks of it once we are done here, we may get to come home and do pheresis about once a week for right now, if aiden's bloodwork stays within the range it is now. He will have dialysis at home for 12 hours each night for now. Praying that his kidney function come back and we don't need dialysis, but for now... Still waiting on test results from Iowa hopefully they will guide is more as far as treatment goes. I apologize for typos. The address for those of you who've asked is:

1935 medical district drive, dallas TX 75235

We are in C5263.
Thank you so much to those of you who have continued to call, email, text is over the past few weeks to check on us and Aiden. You are truly friends and we appreciate you.

Aiden meets the Dallas Cowboys and Cheerleaders!!

Just a quick post to share this link with y'all. Some of the Cowboys and Cowboy Cheerleaders came yesterday to visit the kiddos and bring them stockings. Dallas Morning news was here and took some video. Check out the link to see Aiden...he is about 36 seconds in and then at the very end when Cory Proctor is singing "Happy Holidays" he is actually singing to Aiden who was sitting beside him in a chair....thought y'all might like to see the little toot in action. I'll post an update later. Hugs, Christy and tha toot!

http://www.dallasnews.com/video/?z=y&nvid=311288

12/8/08 Updates

It's been a looong week. David was gone Monday till late yesterday (Friday) back home to work and boy did we miss him. He is back with us until Sunday afternoon and then has to go back home to work 4 days. I got a great night's rest last night, after putting Daddy on duty!



We have been on the regular pediatric floor since Tuesday and let me tell you it is an adjustment! We cannot say enough wonderful things about the ICU staff here at Medical City Children's Hospital and maybe we are just spoiled to them. We've had a few issues since being on this floor but I think they are worked out now. Some of the staff doesn't seem to understand how serious it is that Aiden's central line lumens have 5000:1 Heparin in them...translation...DO NOT FLUSH THE LINES!! Always pull back and waste your Heparin before you do anything else. I have been standing over Aiden like a mean guard dog to keep him safe but I think they get the point now. We also had a issue with his dialysis catheter the first night we were here. My little monkey apparently stepped on it pulling it loose from one of the connectors that hooks him up to his peritoneal dialysis machine. Poor little toot looked at me and threw his hands up like "what happened" ...and there he sat in his crib with dialysis fluid just pouring out onto the bed and his supposedly sterile line wide open...It was almost comical. I called for the nurses and they freaked out. They knew NOTHING about his pd catheter, the machine or even WHO to call or where to find hemostats to clamp this line so at least it's not OPEN to whatever germ wants to crawl in there! I took it upon myself to call down to the PICU and explained to the charge nurse what happened and he was here PRONTO and had the PICU dr. on standby in case we needed him. Thanks Sean! You rock! Again, this was the first night on this unit so it did not leave me with a lot of confidence as to who was taking care of my little toot. You can imagine what happened next, lots of apologizing and it wont happen again stuff.......it took me a few days to get over this but everything looks good with Aiden's catheter and we are infection free at this point so I'm thankful for that. Debbie and the rest of the dialysis staff have started training me on the dialysis machine and made sure from then on that I had the supplies I needed should that happen again. And the pedi manager has made an effort to give us more seasoned nurses to care for Aiden. There are some really good nurses on this floor so I'm not trying to bash them or the hospital but geez! Okay, enough hospital drama and on to the actual updates..



Aiden had plasma apharesis 5 times this week and has now met the 10 treatment benchmark where we expect to have seen improvement, but sadly there has been none. Our hope was the plasma apharesis would work and we wouldn't have to have dialysis. But as it stands now we are doing dialysis every night for 12 hours. Even though the apharesis does not seem to be working, current research says that we should continue doing it until our more specific test results come back. These are the tests we are waiting on from University of Iowa. Dr. Quan found out this week that the earliest we can expect the results is the 2 month mark, possibly as long as 3 months. It is his plan to continue to give Aiden apharesis while we wait.

At this point we don't know how many times per week we will be doing pharesis. I guess it's kind of hard to guage without signs of progress. We did apharesis 5 times this week and are bumping down to 4 times next week. I'm unsure after that.

Sometime early-mid next week we will be transferred to Children's Medical Center of Dallas www.childrens.com (currently we are at Medical City Children's) . They are the government approved training hospital for home dialysis in this area. They will train me on peritoneal dialysis, the machine that does it, etc for 2 weeks to prepare us to manage Aiden's dialysis from home. Aiden will continue his apharesis there. After my training is complete we won't need to be at the hospital except for apharesis as long as Aiden remains stable but will still need pharesis. The question then will be how often do we do apharesis? If they think we will continue to need it 3-4 times per week then we will probably stay somewhere like the Ronald McDonald house and just check in to the hospital as a day-patient on the days we need pharesis. If it is less than that then we will come home and just drive back and forth to Dallas.

Dr. Quan and David and I, don't want Aiden to be in a "hospital" environment any more than we have to. We would love to be somewhere more home-like, especially for Christmas. My only concern there is Aiden's blood count. At this point his H/H (hemoglobin & hematocrit) are dropping every few days and he is having to get blood transfusions. The nurse is on her way in here now to start one for today.

I'm hoping that the weekend is good! We aren't doing apharesis again until Monday, so once we get past this four-hour transfusion Aiden won't be hooked up to anything except dialysis at night! So he can have lots of playtime! :)

He continues to be such a trooper and for the most part stays in a good mood and just goes with the flow. He is awesome!

Thanks to everyone who have sent us messages, food, gifts, etc. We appreciate it and it brightens our day to hear from y'all. Thanks so much to Melissa for letting me borrow her laptop! It's much easier to update from here rather than the Blackberry.

Please keep us in your prayers. I will update as often as I can.

Love y'all,
Christy, David & Toot

hurry up and wait

I am writing this from my blackberry so I apologize in advance for any typos. Aiden continues to be in great spirits! We had some trouble with his central line not working so had to skip apharesis yesterday. Its back up and running now and he had apharesis earlier today and is now receiving 12 hours of dialysis to try to get his BUN and potassium levels back down. They will most likely be moving is out of ICU and to the regular pediatric floor tomorrow since they can do dialysis and apharesis both from there. We will miss our icu nurses!! Still no results back from Iowa and no idea as to when we may be able to come home. David is back home until Friday to work.its a bummer without daddy here with us. Some of you have asked for the address to send things for Aiden. Here it is:

Medical city children's hospital
7777 Forest Lane
Dallas,TX 75230

Thanks again for the prayers and well wishes. We love getting messages from y'all!

Love,
Christy, david and the toot!

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

My sweet Aiden

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