jon03015 (Austin) MAW/GTKTW, Waiting for a date

[jon03015]

I don't know if this is how I am supposed to do this so here goes...

We have been granted a wish and are waiting to hear from MAW what it is. We are pretty sure we are going to Disney World since we have recieved and filled out the GTKW permission forms. Here is Austin's story...

Austin became ill after contracting a deadly strain of bacteria on a camping trip in the summer of 2010.

Austin was diagnosed with Hemolyic Uremic Syndrome. The disease released toxins into Austin's bloodstream. His red blood cells broke down and tore apart blood vessels in his organs, particularly affecting his kidneys. His kidneys had begun to shut down.

Austin's blood had to be cleaned 24 hours per day; the doctor prescribed pain medication and sedatives. Austin wasn't allowed to eat or drink — he received nutrition intravenously — because his digestive system had to be used to eliminate the deadly bacteria.

Weeks passed and the 3-year-old didn't improve. X-rays showed his stomach had enlarged astoundingly. He underwent emergency surgery because the bacteria had attacked his colon and 11 inches of it had to be removed.

As a result of surgery, Austin nearly recovered. But then the doctor determined that his kidney was too damaged to repair itself.

He continues to face challenges; he is fed through a G-tube inserted into his stomach, he has had to return to the hospital because of a variety of complications and he must travel 70 miles for kidney dialysis 2 times a week and sits perfectly still for four hours during the treatment.

He has been approved for a kidney transplant. We are now looking for a donor. He is our hero, and a great kid. We also have a dd, Emma who is 2. She is a trooper, and we are grateful for her sweet loving personality.

I look forward to getting to know you all on here. Sometimes being the parent of a sick child can be lonely even with great support. It is great to hear from others who are having similar experiences.

 

[angeque143]

http://gfx.**********************/albums/ll149/glittergn/welcome/welcome003.gif
I am so glad you are here...I look foward to reading more about your wonderful family and hope you hear soon from the Wish granters!

 

[VBAndrea]

What an adorable boy! I'm sorry to hear he's been through so much at such a young age. I hope a kidney transplant is the answer to everything so once it's all said and done the days of dialysis can be over.

And congrats on getting a wish trip! Keep us posted as to what you find out about your dates.

 

[maroo]

Welcome!!!

I am going to list your pre-trippie on the wish trippers unite thread!

to the DIS!!!!

 

[blessedmom4]

once again.

Austin is such a cutie pie!!! SOOOOOO Happy he has been granted a wish trip!

 

[jon03015]

We feel so welcomed! Thank you all! Here is a video my brother-in-law made about Austin for a fundraiser we had. Please do not donate like it says at the end! I am only sharing this because I thought it was fun. We are almost to our fundraising goal. We have been really supported by our community. So please again do not donate, just enjoy the story and pictures in the movie. Just click the "Austin" link.

https://www.dropbox.com/s/3i9wgtzodivovff
(you can cut and paste the above, idk if my link will work below)

https://www.dropbox.com/s/3i9wgtzodivovff

 

[jon03015]

Cast of Characters:

Our hero, Austin

Our daughter Emma

The love of my life, Ben

Our Family!


Earlier I gave a very short version of our story, so here is the longer version.

On June 23rd, 2010, Austin, two and a half, went camping with his mom and grandparents. As soon as his dad flew in from their home in Thousand Oaks to join the festivities, it would be the start of a long vacation (including a weekend getaway for his parents, a family reunion, a fireworks show put on by his uncle, and many fun days in the summer sun). Unfortunately, while camping and having the time of his life at the lake, Austin and his sister got sick. When Emma started feeling ill, the family cut their vacation short and went home to take care of her. This was the beginning of a story that will continue writing itself throughout Austin's whole life.
The next five days and four nights were sleepless not only for Austin and Emma, but also for their worried parents, Cortney and Ben. Both children were in such severe stomach pain that their bodies would not allow them to rest, and they needed their diapers changed every twenty minutes. On Friday morning, Austin turned blue and started throwing up. His parents rushed him to the ER, where he was evaluated and sent back home. The following day, Emma went to the ER and was put on an IV to help rehydrate her. She began to recover quickly. Hoping for a similar fate for Austin, Cortney and Ben took him to see Dr. who was a friend of the family. Getting an appointment was difficult, but Cortney thought Austin might be in serious trouble, so she persisted and finally got him in for evaluation. Dr. Milligan listened intently to the details of Austin's case, and quickly determined that Austin didn't just have the common flu. The doctor told the family to immediately leave for Sacred Heart Children's Hospital in Spokane, WA. They quickly packed their bags and left, not anticipating more than a few days' stay in the hospital.
For most of that night, Austin was in the ER undergoing a seemingly endless number of tests. As he was obviously a very healthy child in general, he didn't seem that sick at first glance, but at 3:00 AM, the ER doctor finally had some news for the exhausted parents.

"Austin is very sick," he explained. "We're not sure what he's sick with, but we've narrowed it down to three possibilities. They're all quite severe." By the next morning, Austin was admitted into Sacred Heart.

Later that day, Cortney and Ben met Dr. Joel Hernandez, little knowing that he would end up saving their son's life. Dr. Hernandez, a very somber nephrologist, sat down with the worried parents and asked detailed questions about Austin's health. He intently wrote down all their responses, and upon finishing the interview, he had a hypothesis. Austin was showing signs of having a disease called Hemolyic Uremic Syndrome (HUS). Dr. Hernandez explained that Austin may have contracted the deadly bacteria E. coli 0157:H7, which was releasing toxins into Austin's bloodstream. This resulted in a chain reaction: Austin's red blood cells were breaking down and tearing apart small blood vessels in his organs, particularly impacting his kidneys. The doctor told Cortney and Ben that Austin's kidneys were basically shutting down.

The following day, Austin was taken into the Pediatric Intensive Care Unit (PICU) and put on Continuous Venovenus Hemodiafiltration (CVVH) to clean his blood twenty four hours a day. Despite the pain medication and sedatives, Austin was in continual discomfort and was only getting sicker. The balance was very delicate. If they gave him a higher dosage of pain medication, his digestive system would slow down. As antibiotics wouldn't work on the E. coli, digestion was the only way to eliminate the deadly bacteria. This continued for days. Austin was on complete gut rest, and would beg his parents for the food or water which they couldn't give him. Every day, his requirements for medication became higher. He had to have more tubes placed and holes poked in him than his parents ever dreamed they'd see in their small son. Austin was struggling for his life, and Dr. Hernandez was by his side day and night helping him fight.

Several weeks passed with no improvement in Austin's condition, and then he took a sharp turn for the worse. His stomach was growing at an astounding rate. Two stomach X-rays later, a pediatric surgeon informed the terrified parents that Austin was going to receive emergency surgery. Cortney and Ben waited hours for word on the proceedings. Finally, the surgeon came out and told them that the bacteria in Austin's system had attacked his colon, and they'd had to remove eleven inches of decaying organ. Austin was left with a colostomy and no functional digestive system. After the surgery, it took several days for Austin to stabilize. These were some of the worst times of his entire sickness, but he fought through it and pushed his body to survive.

After the colostomy, the E. coli was out of his system. Then, Austin fought a six week battle to get his body functioning again. He managed to recover almost completely, but his digestive system would take a long time to heal and his kidneys still weren't doing well. He overcame blood pressure challenges, nutrition challenges, the challenge of learning to walk and feed himself again, and the final challenge of learning how to have fun like he used to.
After two months of waiting for his kidneys to heal, a biopsy was performed. The doctors determined that Austin's kidney would never recover. Eighty-four days after his first night in the Sacred Heart emergency room, Austin went to Moses Lake, WA for a few weeks before returning to California. Ben had accepted a new job, so he would have a new house and town waiting for him upon his return. Cortney and Ben were thrilled to have Austin at home with them again.

Since his homecoming, Austin has faced numerous challenges. Because he can't eat, he has to be fed through a G-tube inserted directly into his stomach. He also has had to go back to the hospital for a wide array of reasons, including colon reattachment, battling c-diff, flu complications, magnesium poisoning from his colonoscopy prep, needing colon growths removed, ringing in the new year with a bad cold, and chronic stomach problems. Three times a week, Austin must travel seventy miles to dialysis, where he sits completely still for four hours (on top of the countless doctor's appointments and check-ups).

Austin has recently been approved for a kidney transplant, and Cortney is the most likely donor. The kidney will allow him to have a nearly normal childhood, so he can grow and become strong without the pain and inconvenience of dialysis. Unfortunately, the kidney will not last forever (twenty years at the most), and he still has many challenges to face.

Thanks for reading!

 

[Mom2Miracles]

WELCOME!!!

Thank you for sharing your story, i'm so sorry Austin has had such a bumpy time with this ilness (i'm sorry he got sick to begin with ). I hope the kidney transplant is complication free (when is this being planned for?) and gives Austin the childhood he deserves.

A few of us have children on feeding tubes, and my daughter is also nutritionally dependant (she doesn't eat orally) on her feeding tube - though she has a gj-tube (it goes in to her small bowel - jejenum, rather then her stomach). So you aren't alone.

I can't wait to hear how your wish unfolds, and Austin (as well as Emma and your family), have the trip of a lifetime.

 

[jon03015]

WELCOME!!!

Thank you for sharing your story, i'm so sorry Austin has had such a bumpy time with this ilness (i'm sorry he got sick to begin with ). I hope the kidney transplant is complication free (when is this being planned for?) and gives Austin the childhood he deserves.

A few of us have children on feeding tubes, and my daughter is also nutritionally dependant (she doesn't eat orally) on her feeding tube - though she has a gj-tube (it goes in to her small bowel - jejenum, rather then her stomach). So you aren't alone.

I can't wait to hear how your wish unfolds, and Austin (as well as Emma and your family), have the trip of a lifetime.

Thank you! It is the sadest thing in our whole lives that we got sick in the first place. But we have learned many lessons through this that have given us strength and helped us be better people. We do not have a date set for the transplant. I have kidney stones so I cannot donate my kidney it was pretty upseting news. But we have great family and friends that want to donate, and my brother in law is a good match. We are awaiting his test results to see if they will take his kidney. We hope to hear back sometime this week. I hope this turns into this .

 

[cogero]

thank you for sharing your story.

What adorable kiddos

 

[blessedmom4]

Cortney, Thank you for sharing more of your story, I LOVE the pictures, your family is adorable!!

 

[billwendy]

Oh My - what a story - your kiddos are beautiful!!! I really hope you get to go and have a wonderful rest and vacation!!!!

 

[Perrinsmommy]

Beautiful children and what a story. With Perrin being born premature, we had some "advance warning" about his illnesses and disablities, but for it to happen to a healthy child I can't imagine. You are a strong mom with a strong family!

 

[blessedmom4]

 

[Tonyababyrn]

 

[blessedmom4]

 

[Mom2mitokids]

 

[billwendy]

Any new news???

 

[jon03015]

We found out that Austin will be able to have his uncle's kidney pending his uncle loosing weight and his bloop pressure coming down a touch, which will happen if he looses weight. He only has 7 more lbs to go!

 

[blessedmom4]

ENJOY your day!!!