The Fight of His Life Continues: My Six Year Old Grandson Continues His Fight~A Photo Journal
Some Quiet Time...Just before his Momma gets him ready for the day
Just under the cover is the line that runs from his tummy area to the life-giving formula that is flowing into his body. He still is not gaining weight.
His tummy is often bloated and painful. His Momma vents him at least once a day. Venting is removing excess air or formula that has not passed through his tube.
Heston Wayne pulling the wagon with toys for kids
In case you have not read this in another article about Heston Wayne, the backpack is not just a toy carrying addition to his attire.
It is a way that his formula can remain connected to him as he travels around with his Momma.
Heston Wayne Collected Many Gifts for Kids in the Hospital/Staying at the Ronald McDonald House
The Bone Marrow Drive was held and it was a huge success. Hopefully a match for someone will be found...if not for Heston Wayne, hopefully, for someone in need.
Heston was scheduled to have surgery this month on his heart (doctors have put it off as he is too weak right now). He was concerned that Santa would not be able to find him. His Momma told him not to worry...Santa was magical and he would find him. So, he went off to bed where he spends much of his time now. He came back a bit later and asked, "but what about the other kids ? Will Santa find them?" His Momma reassured him that he would but he came back in a bit with his piggy bank.
"Here, I want to help buy presents for those other kids in case Santa cannot find them." (O, my....the tears flowed when I read this and it was all she could do not to cry.)
She said to him that she had an idea. Ask those who come to the Bone Marrow Drive to bring a gift for those children. He agreed that would be a great idea.
So on the day of the drive, folks came to be swabbed and to bring packages. Packages came all day. At the end of the day the huge boxes were overflowing...183 wonderful gifts for children.
What a delighted little boy there was!
And who says one person cannot make a difference.
On the following Wednesday he, his Momma, and his brother traveled to Orlando to deliver the packages to the Ronald McDonald House and to the hospital where Heston Wayne receives treatment...they were thrilled and so proud of Heston Wayne.
Heston Wayne as he delivers presents
More news....Bone Marrow Drive Scheduled in Our Area This Weekend and Heston's Toy Drive...
As you know if you have read this hub and others about my grandson, Heston is in bone marrow failure in addition to being on a twenty four seven feeding tube (the third one placed less than two weeks ago as the others were not getting the job done...we are hopeful this one will.).My daughter has been encouraged to have a bone marrow drive as it is a matter of time till Heston will need a bone marrow transplant and finding one for him is very difficult.
Please view this video (my daughter, Heston's Momma was interviewed by one of the local radio stations on Monday)...it will fill in details for you.
Please continue to share and please donate on gofundme.com if you can.
And thank you and many blessings of the season to you and yours. We are soooooooo grateful for the outpouring of love and generosity of others especially those who have never met me or him and only 'know' us via this hub.
God is good every day...He carries us up and over the difficult times and is the wind beneath our wind each day as we arise and embrace the wonder of each new day.
Most Recent News
Yesterday morning, Heston Wayne's Momma was flushing his line that runs to his gj tube and met with resistance in her efforts. She tries not to wake him during this time so he can get continued rest. However she decided to pull back the covers, thankfully, and his clothing and bed were soaked. The fluids including formula were all over him and the bed. So off to Nemours, his hospital in Orlando.
They deemed it necessary to quickly solve the problem. They found the tube had slipped up into his duodenum so it was necessary to place a new gj tube and cauterize the duodenum.
And, the gj tube was extended to 30 inches so that hopefully this will not occur again.
He is home and on complete bed rest for a week including needing assistance in and out of bed to the restroom.
So our reasons to be thankful continue to grow ....we are so thankful he is having these opportunities to become mending. And so thankful for his Momma being able to care for him with the assistance of Jay, his elder brother, and for his Daddy who works so hard every day insuring that the baby has access to medical care through insurance which by NO MEANS covers all expenses.
Feeling thankful, so very thankful, to each of you who are his HEROES.
Love and blessings and Angels to each of you this Thanksgiving Season and always ps
A second view of the gj tube Heston Wayne will recieve
Most Recent News
On the 17th of this month (November), Heston Wayne will receive a gj tube. I have attached two photos that are Google images of what he will have. The hope is that absorption will become possible with this new configuration.
He may also have pancreatic stimulation at that time depending on how well he tolerates the anesthesia...he has a heart condition now so putting him under is problematic. So please send along more positive energy and prayers for him.
Sweet Little Heston Wayne always has a smile for Nini
My daughter does use the GranuLotion to care for my grandson. I asked her why she recommends it and she said:
"Because it knocks out the granulated tissue. And the granulated tissue is very painful to Heston Wayne so I work real hard to keep it at bay."
Heston Wayne and His Momma are home....He is sleeping.
No further testing will be done at this time. During the testing he had numerous attacks (svt's) and the doctor did not want to put him under anesthesia again tomorrow.
He will wear an event monitor that will provide 24/7 telemetry recording his heart's activity.
Cardiomyopathy has not been ruled out. But the doctor would like to see the results of these recordings before going forth unless he has a severe attack. Under that circumstance he will be taken to the hospital.
So we do not know anything new but we feel comfortable with this cardiologists plan of action and his concern for Heston Wayne.
Thank you to each of you who is following his journey, our journey.
that's his Mario hat...a favorite character of his at present
On the morning of May 27th, 2010, another amazing miracle appeared on this wondrous planet. A perfect little baby....ten fingers, ten toes, a glint in his eyes told us that he would be special and unique just like his brother before him.
And, since I am his grandmother, Nini, to him, I can attest to the fact that he is A M A Z I N G!!
He makes every day brand spanking new!!!
Can you tell he is adored??
Even his name is one-of-a-kind....Heston Wayne. He is named after two remarkable individuals: Charlton Heston and John Wayne....quite a name to live up to and live up to it...he does.
He is inquisitive, vocal, opinionated, clever, talented, loving, thoughtful, long-winded, enthusiastic, intelligent (very), and warm-hearted.
And...He is very ill. He is been through so much in the six years he has been on the planet.
No Diaignosis Could Be Found
Several posts about Heston Wayne have been published here on HubPages...some of them going back several years before his ill health really took hold. Things were going on but no definitive diagnosis was ever made until the last about 8 months. Things were festering and developing but, as is the case with other rare illnesses, it was difficult to pinpoint the reasons for his continuous tummy pains, frequent violent headaches, little interest in eating, and on and on.
He was finally diagnosed in Boston at Dana Farber with Shwachman Diamond Syndrome this year. (The link provides information about that diagnosis),
Thank you to Hubbers who have Donated....we feel so loved
Cardiomyopathy is a condition where the heart muscle is abnormal. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.
source: Mayo Clinic
What is Happening Now....
In the other hubs I have shared about Heston, details about his condition are provided.
This hub is about what is happening at present.
About six weeks ago when he visited the doctor, his Momma was told that his heart is beginning to weaken, that it is having to work too hard now, much harder than it should.
She was cautioned to be certain he avoided sustained physical activity when playing. This directive has not been difficult because this once bundle of energy little guy who loved to run and play outside, often sleeps 12 to 14 hours a day, due to fatigue and lack of energy.
His g tube is his new normal
His Little Heart Has to Work So Hard to do Its Job
His heart has sustained injury, for lack of more adequate terminology due to his body's inability to absorb the nutrients that it so desperate needs.
In the last few weeks he has had frequent bouts of tachycardia often several times a day. Many times it happens just as he settles in to try to sleep.
His doctors are quite concerned and are exploring the cause today.
Transesophageal (tranz-ih-sof-uh-JEE-ul) echocardiography (EK-o-kar-de-OG-rah-fee), or TEE, is a test that uses sound waves to create high-quality moving pictures of the heart and its blood vessels.
NIH ...source as well as the doctors with whom my daughter is conferring and who will perform the procedure
We Need Help...Please share and Please Donate if You Can
Today and Possibly Tomorrow
Today--Heston Wayne will be sedated and doctors will perform
- an transesophageal echo
- an MRI
- Depending the results of these procedures, tomorrow he will have a cath and a biopys to determine if he has myopathy.
"Ok, so I am trying to play this game!!"
Where YOU Fit in this Picture....
All I ask is that you send positive energy, prayers, love, good vibes, and all of the other positives you can muster up.
Please also share the word that we are still raising money on gofundme for Heston and I am still asking for folks to send pennies to my address: POB 554 Hawthorne Fl 32640 The formula he is on costs costs approximately $850-$1080 a month. AND it is not covered by insurance. So we need help.
At the first of the year, the cycle for the $12, 000 a year deductible will begin anew....yes, that is a LOT of numbers. It makes us wonder WHY we have insurance when the deductible is so high.
So please help.
And once again, thank you so very much.
As soon as I know something definitive I will let you know.
Hopefully this post explains why I am not here like I wish I could be.
Bless each of you...Angels are on the way. ps
In July, my daughter's high school class sponsored a golf tournament in Daytona for Heston. Heston wanted to stand out and wave as each cart headed out to play.
Sweet Baby Angel Boy Snuggled Up and Resting
Sometimes a Ride in a Buggy is a Good Thing
Just the Sweetest Little Face....Love Him So Much
He is MY Hero....
This is My Profile Photo..He was at Ronald McDonald House last visit to Nemours Hospital in Orlando.
All photos in this article are used with permission ....they were taken by Heston Wayne's Momma....sscottdunnam
A Few Months Back when he got the ng tube which was not sufficent
Waves of nausea and vomiting after placement of the tube
© 2016 Patricia Scott
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