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AIDEN'S PAGE 
Enjoying summer
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Aiden's Mailbox Address
Pleying at the Beach
Mason running with his feet barely touching the ground
My sweet Aiden
Mason loves the Beach
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Welcome to WELCOME TO MY SITE
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Welcome to Aiden�s website! Aiden is 6 years old.
To summerize, obviously so much has happened inbetween the lines but this is some of the major mapping of his medical journey:
4/19/2002 Aiden is born jaundice, highly abnormal labs
4/26/2002 Hida scan, liver biopsy, labs first month of life
6/3/2002 KASAI Surgery, cholangiogram... 6 weeks old
6/3/2002 Aiden is diagnosed with BILIARY ATRESIA 6 weeks and 3 days old
7/2002 Aiden goes into LIVER failure and immediatly listed for liver transplant 4 months old
10/ 2002 Aiden has severe complications from internal bleeding (VARICIES) placed at top of list (40 peld score)
12/21/02 RECIEVED GIFT OF LIFE - at only 8 months old (praise the LORD!)
12/24/2002 portal vein clots off, rushed to another 10 hour surgery to save liver
12/28/2002 Aiden's lungs collapse he 'codes' reintabated
1/2003 leaves ICU FINALLY! YAY
1/20/2003 develops CMV in his liver and GI tract
2003 First year after transplant treated for 9 rejection episodes
200 days in the hospital in 2003
10/30/2003 sepsis from broviac line
12/31/2003-1/1/2004 total septic shock and DIC
2003 diagnosed with eosinophillic gasterointeritis after multiple scopes
7/25/2005 anaphylaxis to antibiotic starts major 'issues with anaphylxises'
2005 - Aiden develops complication from his prograf (immune supression) causing multiple life threatening food allergies.... 21 anaphylaxises to this date
3/13/2005 STOP ALL Prograf due to 'allergic storm'
4/19/02 Moderate/severe rejection
toxic levels of prograf
11/2005 Mystery symptoms begin
2005, 2006, 2007, 2008 Aiden has too many admissions to count due to collapsing, overheating, dehydration, high blood pressure, bone marrow/ labs issues and more
2/14/2008 After 2 1/2 years of hell and suffering Aiden is diagnosed with DYSAUTOMONIA an "UNDEFINED" TYPE.
5/13/2008 Aiden is scoped again, diagnosed with EOS again in his entire GI tract
7/2008 Aiden has a MEDI-PORT placed in his chest
8/2008 Aiden is placed on nightly IV fluids... this does not improve him
9/2008 Aiden has a loop monitor for his heart, placed under his skin to see what is causing this
10/2008 currently lowering all immune supression medications.. adding and changing medications hoping for best quality of life!
This story is just the beginning. With a diagnosis, no matter how ugly of a diagnosis it is, we are empowered and WILL make him better. One day we will see him playing in the heat of summer, or attending school. One day he will not have to take so many medications and we will make him like he was before November of 2005. Joey and I have faith in miracles, we have faith in healing. We know that God has a plan for Aiden and that he is �fearfully and wonderfully made.�
This journey started out with a little infant needing a liver transplant, and now it is about a little boy wanting to enjoy the life he was given on that day he was transplanted. With prayers, wonderful doctors, and hope for the future� We will have a cure. We know it� just visit this page often because MIRACLES happen here.
FAQ:
WHAT IS BILIARY ATRESIA?
It is the rare liver disease Aiden and about 250 children each year are diagnosed with in the US. Please CLICK HERE for more information.
WHAT IS A KASAI SURGERY?
The Kasai procedure is an operation to create an open duct so bile can drain from the liver. It is named after the surgeon who developed it. The surgeon removes the damaged ducts outside of the liver (extrahepatic ducts) and replaces them with a piece of the baby's own intestine. This new duct allows bile to pass from the liver into the intestine. It has only a 33% chance of success to last longer than 5 years.
WHO DONATED TO AIDEN FOR HIS LIVER TRANSPLANT?
We do not know the family that donated to Aiden. They gave us the most precious gift in their time of loss. No matter their circumstances someone chose to stop in the midst of their greif and think of another family. We will be ever greatful to the infant that we call Aiden's angel.
HOW CAN I BECOME AN ORGAN DONOR?
You have SHARE YOUR CHOICE With your loved ones! You can not assume that having it on your driver's liscence is enough. Your family will be the only one who will make that choice for you. Please think of Aiden and the other children who never got this chance and consider being an organ donor.
WHERE DOES AIDEN GO WHEN HE GOES TO THE HOSPITAL?
Aiden goes to All Children's Hospital in St. Petersburg FL.> for local care.
Cincinnati Children's Hospital for his liver and main over all care.
Dr. Blair Grubb for his Dysautonomia in Toledo Ohio.
WHAT IS DYSAUTONOMIA?
Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment.
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We have set up an account through the American Liver Foundation for Aiden's Fund. All money goes to medical bills, and hospital related expenses. The ALF acts as our trustee so you are insured your donation will go directly where you meant it... Aiden's bills. We thank you in advanced for donations you may give. God Bless!**** ALF is NOT a tax exempt org anymore. Please take note of this change*****
American Liver Foundation
Transplant Trust Fund
1425 Pompton Ave
Cedar Grove, New Jersey 07009
*****All checks should indicate that they are to be deposited into Aiden Hawk's Account. Please fill in the Memo portion of the check, with Aiden Hawk's name.*****
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Aiden was the 2006 Jan MACS child. This is a great organization that send little notes or "happy mail" to children who are going through so much with sickness. I have included his PO box for the vistors from MACS (make a child smile), thank you for visiting! This is his addy for his "happy mail"
Aiden H
PO BOX 7505
St. Petersburg, FL 33734
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Journal
Tuesday, June 30, 2009 9:00 AM CDT
I don't fully know why I have been so silent here on Aiden's page. It isn't like me, and especially since I have so many thoughts and updates swirling in my head. I think sometimes you just feel like a break is in order. Of course after 6 hours in a van with my two boys, and two dogs and no grown up to talk to...I just about wrote this whole update in my head.
I am at a crossroads right now and its my fault really. I have taught you all that I am a skeptic. Or maybe a cynic. I have been angry at the system. I have been mad at the way this whole "greater plan" thing sort of plays out. BUt I am here to change my tune. I take it back. I want a second chance on blind naivety. I want to be innocent in my thoughts and I want you all to believe along side me.
Over the years I have hammered it into my head that even if we ASK for it, we may not receive. That is true. I didn't invent that. It is absolutly true. There was no deal struck with me and God, there was no reason for me to think.. if I pray extra hard it will all go away. Because as a woman of fatih... I have FAITH that sometimes His answer is no.
I have over the last 7 years 2 months grown deeply in my understanding of the words "miracle" and "answered prayer". Miracles can happen in the most subtle moments. Maybe the miracle we are looking for already happened, but the evidence has yet to play out. Answered prayer doesn't mean you can stand at that convienent store check out.. pray "oh god let me win the lottery today" and bam.. you are a winner. Sometimes it is in the silence of God that our prayers are answered, sometimes it is in the worst way our prayers are truely answered.
I have heard mothers say, "My child is doing so well.. It is the 'power of prayer'... " and then hear other mothers who are grieving the loss of their child and saying, "God answered our prayer.. they have had the ULTIMATE healing." Prayer is a difficult thing. Often times I think of prayer as an obediance to God. Sometimes I see prayer as a deep friendship with God, a time to talk about the inner most workings of your heart. But over the last years I have obviously realized that HIS WILL isn't always MY will. But it will be revealed one day (maybe not until I am in Heaven) as the Perfect Will.
How often do we pray that Lord's Prayer and focus on the "Your will be done..." part? Honestly I am actually lying when I say that part somedays. Technically I want MY will done. I techinically wanted to have the day when Aiden's doctors told me he was sick.. POOF be gone and magically never had happened. But it doesn't work like that.
So here it is. A messy confusing road to an answered prayer. This week, Aiden will be going on a trial off prograf and onto another drug called Rapamune. People... THAT is an answered prayer. Yes a prayer that I requested 4 years ago. A prayer that I wasn't even sure I wanted! But it was answered. How it was answered was just in the craziest way. And what is to come next requires me to stop being the cynic and start being faithful. Instead of guarding my heart and saying, "Yeah this won't work.. infact he will reject and it will be a mess"... I am going out on a limb. I am changing my attitude. And I want you to change yours too with me. WE ARE BELIEVING that this child WILL have healing.
The way that God has worked this whole thing out for us.. Aiden coming off prograf, was really part of the miracle that would allow me to believe that this was going to work.
Over 4 years ago, Aiden began to become deathly allergic to just about everything. He would have anaphylaxis, one after he next. It was an all consuming hell. I would be sitting there, hear a cough and go running. My mind whirling, is he breathing? Is he going to live? 21 times my child went into cardiovascular shut down from breathing, touching, and heck just about looking at food or latex. One day he would be eating the food, the next day it would be the thing that would be threatening to take him from us. Life in the Allergic "storm" (coined by top immunolgist who just couldn't understand) was the most terrifying. HIs old doctors recogonized that they were possibly going to lose their patient because there was a chance the prograf was causing this insane immune reaction to everything. They went out on a limb and removed Aiden from Prograf. Aiden was 2 years and 10 months old. On Aiden's 3rd Birthday we recieved a call from his transplant team... Aiden was in a severe rejection. It was so frightening. Words like, "You don't know how close we were to losing the graft (liver)" were on everyone's lips. After 5 rounds of intense IV solumedorl and 2 weeks of being in the hospital, Aiden's liver began to recover. ALl hopes off prograf were dashed. We all felt strongly, even back at our old center, that this medication was saving him and killing him at the same time. After that rejection Aiden was run on extreemly high levels of prograf. Massive levles of steriods kept the hives at bay but the anaphylaxies were going strong. When Aiden turned 3 1/2 Dysautonomia came to be a part of our lives. Except no one knew what it was. You know the story, we seeked, we prayed, we begged and even left on search for a team that had the insight to all this mystery issues. I had all this litature about prograf and allergies. When we met Cincy I came armed. On our first visit they immediatly began to lower the prograf but said because of the severity of his previous rejection they would not likely ever take him off his prograf. The attention turned to the dysautonomia and just giving it a name. What was wrong with Aiden? Every specialist we saw was horrified at the body parts that just weren't working. Kidneys, adrenal glands, heart, intestinal, and his brain. It came to be known Aiden had a neurologic issue that was effecting his entire body. We were in and out of hospitals and then it just got worse. The quality of life was terrible. I had fouight against him getting a wheelchair for stores and threw him in strollers he was too heavy for. As time went by they lowered and lowered the prograf levels. Then last year the conversaton with our transplant team happened.
"We can not find proof to this. We have no way of showing litature that this has ever happened before, but we have a hunch that the prograf is causing a form of neurotoxicity in Aiden. He just can't tollerate the prograf. We would like to wean him by next year."
OK.. NOT the allergies. NOT the anaphylxis.... but dysautonomia? Joey and I cried just knowing GOD must have his hand in this mess. I usually say, "If I can't wrap my mind around it.. then it is God." I leave it at that.
SO lets talk this year. Aiden has been admitted ONE tme. He is on basically the lowest amount of prograf you can be on. His last levels was 1.7 for liver moms. And now.. finally with all the other med trials completed for his dysautonomia, with all the other treatments on hold... it is time to try a new drug called rapamune.
EEEEEEEEKKKKS!!!!!!
This is where my logical brain begins to try to protect myself. The cynic doesn't want to get hurt. The worrier in me wants to cover my eyes. He could reject his liver. We could be back at square one. It could absolutly not make ONE BIT of difference in his dysautomia or his eosinphillic disease or his allergies. It could just SUCK.
or....
He can be cured.
He could be cured. He COULD have no more dysautonomia. He could have NO more allergies. He could have none of it.
God is SO good to have made this THEIR idea. Not mine. It wasn't from the years ago I brought in my wrinkled tear stained articles in. It wasn't because I begged or screamed. THEY decided this. THEY told me. And it helps with any guilt I feel.
What would YOU do? If someone said to you, we have a CHANCE FOR YOUR CHILD to be as close to normal as you have ever known. For him to go to school. To Vacation Bible Schools, to the Movies, to resturants, to have a life that isn't always, "Be careful.. NO!" What would you do if your child couldn't sweat? If he couldn't cool his body or heat it up when he was cold? If you knew your child's heart rate every single night slipped into frightening low levels, that he needed a pace maker because his brain didn't tell his heart to beat normal. But he was too small for the kind he needed. What would you do if your child had to have heart monitors under his skin, ports in his chest, and an IV pole in his bedroom? What would you do when your child leaves a friends house, and proceeds to ask you, "What is in yogurt that I can't have?" or "Can I ever have a water balloon fight?" No. It is all latex baby.
DOn't ever look at Aiden see him running and playing and smiling and laughing and ever ever think, "well he just handles it all amazingly well." NO! NO NO NO. He shouldn't have to handle his mortality!! Do your children? Do they live with this burden?
Would you listen to the doctors that tell you, "It is worth the chance." And tell them NO? Well Joey and I wouldn't. We wouldn't at all.
And for that. Joey and I are choosing to believe this will work. Believe along side me. Please don't come to me any with your worries about this. If you can't believe, please don't share. DOn't dash any hopes we have before we get a chance to have them.
If hopes are the ONLY thing we get... if this fails miserably and he has a rejection, then let us AT LEAST have this hope.
I taught ya'll this cynical behaivor for Aiden. I know that. It is my fault. I have been protecting myself and my heart to think, it can never happen. Then IF he is better than wow.. a bonus. But that isn't what God wants from me!! I am sorry for doing that. I am sorry for letting the pain of the years jade me.
Now.. today, one day before I learn of how we will add the Rappamune and take away the prograf, I am choosing to believe by Christmas my child won't be sleeping in a hospital bed. I am choosing to dream he won't go trick or treating afraid of everything handed to him. I am choosing to believe he will be carrying a book bag to school and sitting in a class with other children.
Most mom's get to live that stuff.. I just want to believe it will happen to us.
So today... I am excited. My husband wrote me a long letter one morning.. he told me how he felt like at the top of a mountain. How the world seems so clear and how everything can go as we dreamed. We are choosing to have faith. I KNOW he will be cured. He may even have some bumps.. but if it took 4 years to answer the prayer to get him off prograf, I am willing to accept that this journey is nothing like I expected.
Exciting stuff will be happening. I am doing the very best I know how to do. I hope you are along side us and here to be that cushion we need.
BELIEVING, (maybe for the first time in a long time)
Lisa
Team Mom to the Hero of the game, Aiden.
Read Journal History
Hospital Information: Patient Room: the messy one on the right HOME
Links: http://www.hometown.aol.com/rolexh/Aidenshope.html Aiden's old webpage!!
http://www.classkids.org Where all my friends are
http://www.caringbridge.org/ga/haley Haley's Website
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