|
Click here for most recent Update
Aiden's Mailbox Address
BEST FRIENDS
DONATE LIFE!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Welcome to WELCOME TO MY SITE
Made with love by The Heroes Banner Site
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.
<><><><><><><><><><><><><><><><><><>
We have set up an account through the American Liver Foundation for Aiden's Fund. It is a tax exempt foundation. 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!
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.*****
<><><><><><><><><><><><><><><><><><>
FIVE YEARS AGO... THE PHONE RANG, AND OUR LIVES CHANGED, FOREVER
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Journal
Sunday, November 16, 2008 9:21 AM CST Did you notice at the top of the page the handy dandy link that scoots you right here to this spot? My fairy God mother.. Umm I mean Alex from MACS (Make a child smile) did that for me. Aiden is now being featured currently as one of their “active kids” on the site. Check them out and then please more importantly check out the awesome kids that are also featured. They need your prayers. They org has changed their format and now you can link to the kid's pages so read about them and know how there are kids who are warriors all over. A little shout out to Olivia, as we met Olivia and her AWESOME family for the first time 6 years ago in Atlanta. I love that family.
Anyway, thank you Alex and thank you to any MACS visitors. Aiden thanks you so much.
Now on to the UPDATE:
Yesterday we spent the day in the ER with Aiden. It wasn’t MY idea of a fun Saturday, but we did get to see our Mack-Daddy ER nurses! (Thank you Yolanda, Megan, Kim and others!) Aiden wasn't sick, just needed his port flushed, IV fluid and labs ran.. but it still wasn't what I would consider the highlight of my week. Joey has worked at least 23 days in a row with out one day off, and most the days are starting before sun up and home at sun down. (He loves it!) Yesterday, my compassion for him and his hard- back breaking work, went out the window. I couldn't help it, my selfishness was at an all time high. It is never a good time accessing Aiden's port, flushing it, doing IV fluids, but there was this little extra something that just made it all the more... ummm.. well ... tedious.
He is about 27lbs, has the biggest blue eyes and long lashes. He has the adorable squeaky voice, and pouty lip..
he is the LITTLE BROTHER.
OH MY GOSH! I am now bowing to all the single moms, all the moms who do this everyday with No Joey's ever. ARE... YOU... Kidding.. me??! Mason was like a tiny tornado and for 6 hours that tornado asked the same question every 3 seconds, (in the squeaky voice) "CAN WE GO? ARE WE DONE?"
No. No No No No No No No No
Aiden was even laughing his head off at the end covering his ears and then saying to me with IV sticking out of his chest, puffy eyes from his crying,
"Alright ALREADY, We are NOT doing this again, with out DADDY!"
I am totally kidding.. Mason is a JOY! We are so thankful for him. Oh Mason, He actually makes me Glow! I know he was a very very special Gift from God. I know God actually really really planned that amazing little boy in our family, at the perfect time. It is one of those things in my life I actually DO have clarity about. I KNOW with out a shadow of a doubt that it was a perfect plan!
I was talking to my friend Cheryl, (yes.. HER again), she had this revelation.
We all know Aiden has had a very bumpy road post transplant. The first year after Aiden's transplant it was 200 days. Aiden was this rambling toddler, all perfect and funny, but just in and out of hospitals. Nothing was ever very serious just serious enough for us to think we had to relocate to Atlanta, and accept that out lives were destined to be the "rocky" post transplant family.
Then 2004 happened.
It was like this year that I hear about from kids like AWESOME ANOTHONY>. Aiden was so healthy! Joey and I were just re-introducing ourselves to one another, and we declared...
"If Aiden can stay out of the hospital for 1 year, we will have another baby."
Before the year was up, I got pregnant, and some of you remember I lost that pregnancy. We were now determined to have a baby, I had felt pregnant, I felt the joy of the future with another tiny baby, and just wanted to have that so bad. Aiden remained Healthy. In the beginnging of 2005 one year to the day of us declaring we would try to have another baby, we became pregnant with Mason. God Blessed us with this precious miracle, and I thought, finally... Aiden is healthy with just some bad food allergies, and life will be good.
OK no.
2005 was the year it all began. In the hospital 19 times that year, Massive rejection, anaphylaxises one after the other, 3 times his bone marrow supressed and he needed transfusion or admissions. He had pneumonia and colds. Heck he was septic once that year. It wasn't so fun.
I remember Aiden being so terribly sick from a rejection, and his surgeons and doctors piling into his room, They began to talk about sending him to do a special procedure on his bile ducts, and in the middle of our PA's sentence, I barfed.
Morning sickness.
I kept thinking THIS ISNT what we wanted! I don't want to drag a new baby into this life of hospitals and sickness. The unknown future. I don't want to 'do that' to a baby. I was so scared, but so excited at the same time. It was complicated.
Back in May of 2005, when I barfed during our Surgeon telling us about Aiden's liver procedure, and how terribly serious his rejection was, it was that VERY day I was due to deliver the baby I miscarried. That very day.
I remember thinking, “Today I would have been in a hospital in another state delivering a baby while my other child was seriously ill in a hospital almost about to lose his liver.“ I remember realizing that Joey wouldn’t be able to be at the birth of our baby because he would be with Aiden. I remember sitting there weeping and realizing that even in the sadness of a lost pregnancy I got to see how God still works and how He loves us.
Personally, I believe Mason is that same baby.. but just put on hold. Weird I know, but that is how I feel.
Things weren’t and haven’t been all easy with a second child after the first being chronically ill. I remember nursing Mason one time and Aiden having an anphylaxis.. His meal is abruptly ended as I run to save his older brother’s life. 911. My body screamed for the baby crying on my bed for me, but my mind and heart knew that if now epi-penned Aiden would die.
I remember another time Aiden had some sort of a seizure or something and we arrived at our pediatrician’s office. They weren’t there. The only time they weren’t there for lunch, and we were there with Aiden sick. I was forced to call 911 as I knew I couldn’t drive and take care of Aiden. The ambulance got there, and Aiden’s heartrate was dangerously low (sound familiar?) They rushed him by ambulance still in his Easter clothes from the Easter egg hunt we just had. But Mason couldn’t go in the ambulance with us. The paramedics told me to go with Aiden and they would stay with Mason till my parent’s arrived. Baby brother laid cooing in his car seat, as we sped away with Aiden.
THAT IS NOT WHAT WE WANTED.
I think sometimes the siblings of sick kids get forgotten. Do they endure the pokes, the pain, the same as their sick brother or sister? No not exactly. But they do endure it. SO many times Mason was protected and kept from Aiden’s sickness. But he still knows. Maybe some people think it is cruel for siblings.. but I beg to differ. These siblings are amazing! They are heros too! They are awesome and strong and turn out to be doctors, life savers, healers, therapists, teachers, and just wonderful people BECAUSE (not inspite of) the things they have witnessed.
Yesterday, I pulled into the ER parking lot ready to go in to do what we had to do. I was chatting on the phone to a friend and I hear from the back seat in this soft grown up voice,
“You will be fine. You will be fine, Aiden.”
It was Mason. Sent from God… Mason. Consoling Aiden, knowing Aiden will soon be crying, that soon he will be hurting. I gasped outloud and tears immediately stung my eyes, I hung up the phone and just thanked God for that baby brother.
Is it worth it? Yes! What would we do with out that squeaky voice asking us if we can go home every 3 seconds? As Cheryl said, “Lisa, I think God gave you exactly 12 months of health with Aiden so you could HAVE Mason. He is your miracle. He was the miracle we prayed for. The miracle for Aiden.”
Sure they bicker and they sass each other. But when it counts, they lift one another and they were made perfectly for each other and this difficult road.
Aiden was crying during his port access, and when it was done, he looked over at Mason, who was sitting in his stroller. Not really worried, but still watching. Aiden looked at him, sniffed up the last few tears he had and said in his sweet baby voice way, “It’s OK Mason.. It’s ok.”
I guess looking back, even though I was cranky at Joey for working another day and not having someone to help me with Mason, I got to witness the full circle of that AWESOME plan God had. When years ago Joey and I said, “we would not have another baby unless Aiden was healthy for 12 months”…
-Lisa
Read Journal History
Links:
|
|
