AIDEN'S PAGE

Swimming last month at his Mimi and Grandpa's pool




Aiden at his very first movie ever! We took him to the Drive-In Theater to see Wall.E !! I love you Aiden!







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Welcome to Aiden’s website! Aiden is 6 years old. He was born with a rare liver disease called Biliary Atresia. About 250 children are diagnosed each year. Aiden became very sick at a very young age. He had his first major surgery at only 6 weeks old. This surgery is called the Kasai, and it is done to help save children with this disease. The Kasai did not work well for Aiden and soon after, the doctors said with out a liver transplant Aiden would not live to celebrate his first birthday. Aiden suffered from many terrible complications to end stage liver failure. He had cholangitis (a liver infection), ascities (fluid in the abdomen) and the worst was his very poor clotting times and esophageal varicies (he bled internally).

On December 21, 2002, A special family lost a baby. IN their sadness they became heroes. They donated their child's liver to our precious baby and gave Aiden his Gift of LIFE! It was a real miracle.

After Aiden’s transplant, he had a rocky road. Aiden spent 200 days in the hospital that year after transplant. Aiden developed CMV in his GI tract, and his liver. His liver numbers didn’t recover for 11 months. Then in the fall of 2003 Aiden’s doctors diagnosed him with a disease called Eosinophillic Gastroenteritis. This is where his own immune system was attacking his GI tract. His body was becoming confused with all the new medicines and soon it would go haywire.

Not long after, Aiden began to develop what they called an allergic storm. He was have severe life threatening food allergies to so many foods we stopped counting. Even if he touched the food, or breathed it, he would go into anaphylaxis. This is when we realized he could not ever attend school like this; things were just out of control.

In October of 2005 we all suffered an incredible loss. Our best friend’s daughter lost her brave fight and became an angel in Heaven. Haley Christine Vincent changed us all and we will never forget her.

The next month, November of 2005 Aiden woke up one morning, stood in our hallway looked at me and started screaming at the top of his lungs. He was screaming, “I am so thirsty! I need a drink!” The next moment he collapsed on the ground. Aiden lay crumbled in a ball on the floor white as a sheet of paper, and his eyes rolling in his head. He began to vomit, and have diarrhea. Once in the ER, my gut instinct was screaming in my head that something was wrong, and we couldn’t ignore this. Aiden’s labs came back and for some reason his Hemoglobin, Hematocrit and all his Red blood cells were very elevated. They sent us home, and our new nightmare began. Over the next few weeks he repeated this exact episode. It went on for many months. I began to panic while I watched everyone else tell me it was not a big deal. You can never argue with a mother’s instincts.

Spring of 2006, Aiden was with his father and I was out of town. Aiden became very ill, He had an episode but this time though he didn’t come-to and just get over it. It just kept getting worse. Joey took Aiden to the ER, they said he had a stomach bug, gave him a few hundred CC’s of IV fluids and sent him home. Aiden was worse again in hours. Again, back to the ER and IV fluids. perk up.. send home. This happened one more time….and yet again on IV number 3 they sent him home. After sending his labs to his transplant center they promptly flew Aiden up for a direct admission to the hospital 8 hours away. Aiden’s admitting diagnosis was “Acute Renal Failure”.

Something was wrong, and everyone knew it. We saw Neurologists, cardiologists, and immunologists. Aiden had a MRI of his brain, sleep study done, and heart tests. With each test the doctors just said, “it is the flu” but I had been dealing with his fainting and collapsing since the fall. His Hepatologist knew it was not normal, but everyone who he consulted over Aiden just didn’t help us. The cardiologist ignored us and it seemed no one would listen. They decided to discharge Aiden but once unhooked from his IV’s Aiden began to faint and vomit non-stop. They said he was still dehydrated. But couldn’t explain how a child who had been on constant IV fluids for 5 days was still dehydrated. Finally after a week Aiden was sent home with no answers.

Aiden continued on with his symptoms for many more months and was admitted for heat exhaustion. It was that summer when we discovered he was not sweating anymore, and his body wasn’t cooling itself. Just 10 minutes outside and he would get a fever! This was not normal. Joey and I discovered if we over loaded him with Gatorade he seemed to do better. Aiden’s skin was turning from red and veiny to pale white like a ghost. Sometimes a couple times a day. The summer seemed like it was better for him except for the heat, but when the fall came Aiden was collapsing and vomiting again. Aiden was admitted again and this time, one of the nurses noted his incredibly high blood pressure. Immediately our pediatricians consulted a nephrologist. It was now another symptom just added to the rest. During that admission Aiden underwent a painful bone marrow biopsy, in hopes for answers. Thankfully he had no malignancy. Our pediatricians worked tirelessly to help Aiden as they saw him getting worse and worse. It had been one year since it started and we still didn’t know what was happening.

Another piece to the puzzle was given to us when Aiden suffered from an anaphylaxis at transplant camp. He had cardiac arrhythmias in the ambulance. The cardiologist didn’t like what he saw on the EKG and had him monitored overnight. Every few minutes, Aiden’s monitor would alarm with his heart rate going to the low 50’s and high 40’s. I explained to the nurse that this was “normal”.. and she explained right back to me.. NO IT ISN’T. Over many months in his chart it was noted his hear rate was very low at night. His local doctors suggest him do a sleep study, but I explained he already had one done the year before. We got the results.. and right there in black and white it talked about his bradycardia (very low heart rate) while he slept. Why did it take another year for us to add this to the puzzle?

I knew it was time for a new set of eyes on my baby. No matter how much the doctors cared… I was his mother and I knew it was time for a second opinion. 2 ½ years had gone by and he was still suffering from life threatening food allergies, unable to attend school, and this new weird stuff was taking over our lives. We flew Aiden to Cincinnati Children’s Medical center in Ohio. They agreed there was a “multi system” problem happening with Aiden, and sent us to see every single specialist in the hospital.

July of 2007, We sat and explained everything to Dr. Jackson, a kidney specialist. She listed to everything and then said….

“Have you ever heard of Dysautonomia?”

I knew in one moment when she mentioned that name.. we were done with our search. THAT would be his diagnosis. More testing, more doctors, and sadly a lot more admissions for Aiden, we finally eliminated every other hunch, and the doctors kept coming back to dysautonomia. Scheduled to see a doctor in New York City… the door shut to that doctor, and Aiden was now scheduled to see Dr. Tim Grubb in Toledo Ohio.

Finally on Valentines Day of 2008 we sat with the most compassionate doctor we had ever met. The world renowned Dr. Grubb, looked at Aiden, and said, “Your son has dysautonomia.”

I could not hold back the tears and the cries.. I wailed right there in the office. Finally 2 ½ years since the day he collapsed screaming for a drink in my hallway, Aiden had a diagnosis. Dr Grubb, did something so sweet, he reached out, and held my hand. He continued to talk about what this meant, and what life would be like for Aiden, while holding my hand. I felt almost like I was holding an angel’s hand, finally, we knew.

Aiden has a type of dysautonomia that has it’s own category. We do not fully understand it yet. We have seen him worsen so much this past year, and Dr. Grubb warned us as Aiden’s center of gravity changed, he could possibly become sicker. It was so hard to hear, but we just needed to hear something. Dr. Grubb told us he was suspicious that Aiden’s bradycardia (his low heartrate) at night was actually playing a major role in his problems. He was concerned that Aiden’s heart was actually stopping in the night. He ordered a special heart monitor to be placed in his heart to see what his heart is doing during an episode. He wrote for a “coolvest”, some flourinef to increase his blood volume, and some other heart testing to make sure it wasn’t a defect that we were missing. Joey and I were exhausted, emotionally spent with all the news we had learned, but now ready for our new battle.

Much to our dismay we hit another roadblock when our local cardiologist said they didn’t feel comfortable doing these tests on Aiden. Somehow we had to find the money to fly back to Ohio to get the tests done. Once again with a Garage sale, God Provided. On May 13th of 2008, Aiden met his new cardiologist, Dr. Knillians. Dr. Knillians said with out a doubt he also supported Dr. Grubbs’ diagnosis and went ahead and did the testing ordered months before. Aiden was cleared of a heart defect, which left us with the possibility that Aiden’s heart is actually stopping for beats in the night while he slept. If they can prove this, they will place a pacemaker in his chest.

As of now, we are still trying to understand Aiden and his complicated diagnosis. His team feels it is related to his transplant medications. We know it has gotten worse over the years, but we also have accepted how we can help him have a better quality of life. Aiden will be getting a port (IV in his chest wall) placed to run IV fluids at home. We are tweaking his medications to help his blood pressure from spiking and dropping, and we are doing everything we can to help him with his problems with regulating his body temperature… 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 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. 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.*****

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Thanks so much for visiting, and please visit my other website. It has a lot of links and fun things to look at! www.hometown.aol.com/rolexh/Aidenshope.html





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FIVE YEARS AGO... THE PHONE RANG, AND OUR LIVES CHANGED, FOREVER.

Journal

Thursday, July 3, 2008 8:21 AM CDT

From Aiden to Spencer:

"I am watching TV, Love Mr. Computer. John Wilson"

To everyone else:

Well How do I update with this? I will just gor for it.

Once we arrived in front of our cardiologist, he was very uncomfortable with the incrediably high doses of steriods Aiden was on, and what it had done in such a short time to his body. He felt Aiden was now too high risk for the surgery.

He wanted Aiden's heart monitored, but just was too nervous about all the steriods and supression. So, Aiden was placed on a holtor monitor for 24 hours, and NOW he has another heart monitor he will wear for one month. This was not what anyone wanted, but of course as life would have it, sometimes things don't work out as planned.

Aiden was devastated about the holtor monitor, I had to hold him down to put it on. He was so mad. I don't think I saw him smile for the entire 24 hours. I heard him tell Mason, "I have to wear this heart THERMOMITOR because they didn't do my boo boo surgery." I could see in Aiden's eyes that he would rather have it over with than have to wait again.

SO now he will wear an external monitor and we must return in a month or 6 weeks when Aiden's steriods are at a normal level. Gee just what we can do. No problem. Sure.

Anyway, obviously God has some plan in all of this. I don't understand. Dr. Knillians (cardiology) hopes to catch an arythmia with out surgery, but just was very very uncomfortable with the obvious side effects Aiden has had from the steriods. He has requested he come down faster on the steriods. I just pray Aiden does fully go into remisson from his Eosinophillic disease so we can. UGHHHHHHHHHH

Second thing that has come out of the apointment was at least he got to see Aiden's hands do the "turning purple/red" thing. Thankfully (or not) he was incrediably veiny that day and the cardiologist could see the blood filling the "tiny capilaries" in his hands and arms. He explained something about Aiden having very poor vascular tone, and that all of these things were caused by a failing autonomic system.

He wanted (just as Aiden's pedi) to see what Aiden's symptoms looked like with out the steriods. Could the steriods be putting him in this persistent dysautonomic crisis? Or is it that Aiden is worse? He asked me that several times. DO YOU THINK HE IS WORSE? I kept saying, "I don't know what or why.. but he IS 100orse than last summer."

We all still agreed that IV fluids were the way to go, but again not with the steriods. He wasn't so worried about him HAVING the port, but more healing from the surgeries. He is just on such high high doses.

SO the last good thing that came from the appointment was the discussion of Aiden's medication. Joey and I felt the flourinef has been helping Aiden with his symtoms. Not really where he is anywhere near normal but we did actually feel him sticky a few times.

Ok explaination:

Aiden can not sweat. Most of Aiden's problems revolve around one major problem. Blood volume. For some reason Aiden's kidneys dump out all of the oral fluids that Aiden needs. His kidneys are working 300vertime and in result no matter how much Aiden is drinking, he is dehydrated. When a body is loosing so much fluid, it tries to hold on to any or all it can. SO Aiden's body has told itself,.... DO NOT SWEAT. If he sweats he will lose more fluid. Of course all of this is a big mistake and Aiden NEEDS to sweat to cool himself and not overheat. SO, the doctors put Aiden on a medication called Flouirnef. This helps your body retain fluid. It makes you not urinate as frequently, and helps your veins plump up with more fluid. Aiden is on a typical adult dose... But over the past few weeks we have actually felt Aiden a tiny bit sticky. Not sweating, but some moisuture on his back. This is the first time in 2 1/2 years. To us it is huge!

So, while we were at the appointment, we discussed this tiny victory and talked about some more ideas. Dr, Flores our st. pete kidney doctor wanted to try Aiden on Clonidine patch. The Cinci doctor also agrees that could help Aiden as well. It seems this is a common drug also used in patients with dysatonomia. It is a blood pressure medication but a special kind of blood pressure medication. It specifically works on the "catacholamines" that his adrenal gland secretes.

OK explaination:
Aiden's adrenal gland secretes a hormone called catacholomines. This can results in great spikes and dips in blood pressure. It effects Aiden's kidney production and his problems with his vessels leaking fluid. The point of this medication isn't really about the blood pressure, but by calming this process maybe we can see a more stable Aiden as a result.

They have a theory that the steriods have also causing peaks and valleys on Aiden's blood pressure thus he has had a TERRIBLE last month or so. Reason number 3 to not do anything till he is down lower on the steriods.

SO, the plan is:

Aiden wear external heart monitor for the next 30 days
Get Aiden back to his baseline 7.5 mgs of prednisone
come to cinci for Reveal dx (heart monitr)
PLace port
Add the Clonidine Patch
wait one month on clonidine patch and then double Aiden's flourinef to max dose.


SIgh. That is the plan.

Joey and I just sat talking to the cardiologist and there was one thing clear... we are about to exhaust all the treatments that they have for Aiden's terrible disorder. If his heart monitor does not show any Stops or major problems other than the low heart rate at night, then we kind of are out of options. Not out of hope.. just options.

This is so hard. I just want Aiden back to normal.

SO now we wait, We are getting some R and R, some peace, and some family time at our dear friends. We arrived in the beautiful mountains of Tennessee yesterday at Angel Haley's House. Aiden had not smiled in over 30 hours. Not one smile. Nothing. When he got here, he ran to Bruce and Nick and Logan and then Cheryl with a huge grin and hug. The famous Kendall is at a sleep over, so today will be wonderful when she arrives.

The weather is easily 15 degrees cooler here. Aiden is playing and laughing. Last night they got mason jars and caught fireflies. Joey and I are blessed to be with Bruce and cheryl, They know the ups and downs of this life of the sick kid.

So this morning, when I woke up I said to cheryl.. how do I update this news? How do I even say, what happened on our trip? She simply said

"The bad news is: they thought Aiden was too high risk for the surgery. Come back in a month

The good news is: we get to spend some time with our friends before we go home"

Yep that is pretty much it.

I need some boosting. I need some more energy, and where else can I get it than a place that is so full of hope. Even in the worst of worst scenarios. One thing I know for sure, If Aiden was never sick we would have never got to meet Haley and her family.

SO now it is a new morning, I am just reminding myself that everything has a reason, and that even though the last several visits to the hospital have been amazing and great, that this was just par for the course. Dissapointing but also part of the plan. I don't want to risk Aiden just because of convienence and timing. If they are worried about him, I don't want to do it. I will wait for the time is right and we will figure it out from there.

Keep praying, I know we will have a mircale for Aiden.

With love and resolve
Lisa
the Team Mom

E-mail Author: RolexH@aol.com

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