The Fight of His Life Continues: My Six Year Old Grandson Continues His Fight~A Photo Journal

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

This is a google image of what the gj tube configuration will resemble that Heston Wayne will receive. At present he has only the g tube.
This is a google image of what the gj tube configuration will resemble that Heston Wayne will receive. At present he has only the g tube. | Source

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.



This is a Google image of the gj tube...this is what Heston Wayne will have on the 17th. He presently has the g tube only. (I make no claims to this photo.)
This is a Google image of the gj tube...this is what Heston Wayne will have on the 17th. He presently has the g tube only. (I make no claims to this photo.) | Source

Sweet Little Heston Wayne always has a smile for Nini

Source

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."

Update #1

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

Source

Another Miracle

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

Source

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!!"

Source

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

Just relaxing....

Source

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.

Source

Sweet Baby Angel Boy Snuggled Up and Resting

Source

Sometimes a Ride in a Buggy is a Good Thing

Source

Just the Sweetest Little Face....Love Him So Much

Source

He is MY Hero....

Source

This is My Profile Photo..He was at Ronald McDonald House last visit to Nemours Hospital in Orlando.

Source

Acknowledgment

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

Source

Waves of nausea and vomiting after placement of the tube

Source

© 2016 Patricia Scott

More by this Author


60 comments

pstraubie48 profile image

pstraubie48 4 days ago from sunny Florida Author

Hi btrbell...he is an inspiration to us daily. He has adjusted so well to his new life. It is simply amazing to us all. His brother did the same thing (and still does at age 21) after his similar journey as a young child

Hoping all is good with you. We just keep on keeping on.

Angels are once again on the way to you ps


btrbell profile image

btrbell 6 days ago from Mesa, AZ

What a precious little guy he is! I love seeing how amazing he is. I just wish ge didn't have to go through all this! Poor little guy. Thinking of all of you and praying for strength. ❤


pstraubie48 profile image

pstraubie48 6 days ago from sunny Florida Author

Hi flourishanyway

It is difficult but you can't really tell him that. His new lifestyle is his new normal...he has adjusted so well...it is amazing. He, like his brother, whose youth was very similar to Heston Wayne's also adjusted to the stream of doctor visits that he endured without complaint, as if that was how things were so he would live his life despite being ill.

How blessed we are to have these two precious boys (one now a young man) in our lives.

and thank you for stopping to read and share your thoughts.

Angels once again are on the way ps


FlourishAnyway profile image

FlourishAnyway 6 days ago from USA

Such a difficult journey for such a young fellow, and so tough to watch for loved ones, I'm sure. May you have all the peace and strength and resources needed as you continue on this difficult path forwards.


pstraubie48 profile image

pstraubie48 7 days ago from sunny Florida Author

Thank you, Rolly. We are so blessed that so many care about him. He is a doll...that is all I can say. He and his older brother have both stolen my heart.

Thank you again for your kind words.

Angels once again are headed your way ps


Rolly A Chabot profile image

Rolly A Chabot 8 days ago from Alberta Canada

Hi pstraubie48...

Special hugs and prayers from Canada for your grandson Heston... know that you are dearly loved as all the family continues on this journey... sending healing angels...

Hugs and Blessings


pstraubie48 profile image

pstraubie48 8 days ago from sunny Florida Author

Thank you, Audrey....we are blessed...one day at a time ....is how we make this journey.

Love and blessings for a lovely Thanksgiving Angels are once again on the way to you. ps


AudreyHowitt profile image

AudreyHowitt 8 days ago from California

Hugs, hugs and more hugs! Thank you for your beautiful spirit!


pstraubie48 profile image

pstraubie48 9 days ago from sunny Florida Author

Thank you, Gypsy Rose Lee. He has new issues since I posted the most recent update and do not know what they will mean. But we have today. And we revel in him and the joy he brings us.

Angels are once again on the way to you ps


pstraubie48 profile image

pstraubie48 9 days ago from sunny Florida Author

Thank you Nell for your kind words. He is fragile and has more new issues but we are so thankful today for each new day for us and with him.

Wishing you a lovely and blessed Thanksgiving ps


Gypsy Rose Lee profile image

Gypsy Rose Lee 9 days ago from Riga, Latvia

God bless that sweet little boy. He is adorable and it breaks my heart to think of all he has to suffer. I now God is looking out for him and I will put him into my special nightly prayers. Hugs to you and love to Heston.


Nell Rose profile image

Nell Rose 11 days ago from England

Bless him poor little guy, hope everything goes well for him.


pstraubie48 profile image

pstraubie48 12 days ago from sunny Florida Author

Thank you Martie for your kind words. All of the positive energy and blessings he receives helps more than you know.

Angels are on the way to you this morning. ps


MartieCoetser profile image

MartieCoetser 12 days ago from South Africa

Auw, I am so sorry to hear about your grandson's fight against Shwachman Diamond Syndrome. It is almost unbearable, seeing our children and grandchildren suffer pain and discomfort.

I'm sending lots of positive thoughts wrapped with love. May Heston Wayne receive all the love and strength he needs to fight this horrible syndrome, and may his parents and grandparents, too, receive the blessing they need.


pstraubie48 profile image

pstraubie48 13 days ago from sunny Florida Author

Thank you, happymommy...yes he had the surgery and got home about 5 last evening. He is not feeling great and has a fever so they may have to return to the hospital. We are hopeful not.

Your thoughts are so appreciated.

Have a blessed and lovely Thanksgiving ps


pstraubie48 profile image

pstraubie48 13 days ago from sunny Florida Author

He IS amazing, Jodah. They got home from the hospital about 5 last night...he is in a lot of pain, more than was foretold, and has a fever. They may be returning to the hospital today. We are praying not.

Thank you for stopping...

Angels are once again on the way ps


Happymommy2520 profile image

Happymommy2520 2 weeks ago from East Coast

Hi there. I just read your post that your little guy is getting surgery again. I will say some prayers for him for at least the next few days. I wish your family a happy & healthy Thanksgiving!


Jodah profile image

Jodah 2 weeks ago from Queensland Australia

Poor little guy. He is so brave and from the pics looks so positive. Sending good vibes, wishes and prayers his way. He deserves a miracle.


pstraubie48 profile image

pstraubie48 2 weeks ago from sunny Florida Author

Shyron, you are so dear for taking the time to compose little passages for our lovely boy. We remain ever hopeful that this new surgery will help.

Angels are keeping busy tonight coming your way ps


pstraubie48 profile image

pstraubie48 2 weeks ago from sunny Florida Author

Thank you Jemuel for stopping to read and comment. I will read your comment to Heston Wayne. He will be very touched no doubt. He knows of so many who care and show concern for him.

Angels are once again on the way to you ps


pstraubie48 profile image

pstraubie48 2 weeks ago from sunny Florida Author

Your quote from Aristotle is so spot on...am adding it to those that help keep me grounded and centered. Little Man is amazing...thank you so much for your kind words and thoughtfulness...we feel the caring and concern from around the world. If you view other comments I have written today you will see that Heston Wayne has a big week ahead. Please keep him in your thoughts and thank you so much.

Angels are once again on the way to you ps


pstraubie48 profile image

pstraubie48 2 weeks ago from sunny Florida Author

Thank you so much , lawrence...and we KNOW the power of prayers. If you read other recent comments I have made, this is a big week for little man. He will have another surgery so many prayers are needed and welcome.

Sending Angels and prayers and blessings all the way to New Zealand.

ps


pstraubie48 profile image

pstraubie48 2 weeks ago from sunny Florida Author

Thank you Peggy....we so need financial help to pay for his formula and other needs that are not met. I keep wishing I would win the lottery but it is necessary to buy tickets to do so.... :D

He is an amazing little man and we remain ever hopeful that good things are coming. We are truly blessed in so many ways.

Hoping for you and yours a wonderfully blessed Thanksgiving.

Angels are always on the way to you ps


Shyron E Shenko profile image

Shyron E Shenko 2 weeks ago

"The ideal man bears the accidents of life with dignity and grace, making the best of circumstances." __ Aristotle

I just read the quote above and instantly thought of Heston.

Angels, pennies and lots of love with all the blessings it is within my power to send are on the way


Shyron E Shenko profile image

Shyron E Shenko 2 weeks ago

Patricia, thank you for the update on

Our inspirational hero

Heston shows us how to inspire

When things are not going right

Without grumbling, griping or complaining

He touches all who hear of him

We admire his strength of character.

We all love you Heston.

Blessings and hugs dear friend.


jemuelO profile image

jemuelO 3 weeks ago from Cebu, Philippines

Keep on fighting, brave Heston! I am sending my prayers to you. I know this has been a tough journey, but hang on tight there... you are courageous and amazing kid.

Thanks Patricia for keeping us updated. I can't wait to read about Heston's recovery in the next few days.


lawrence01 profile image

lawrence01 3 weeks ago from Hamilton, New Zealand

We're praying


Peggy W profile image

Peggy W 3 weeks ago from Houston, Texas

Continued prayers and good wishes are headed your way. Will also share this again and hopefully those who are in a position to help will do so.


pstraubie48 profile image

pstraubie48 3 weeks ago from sunny Florida Author

O thank you so very much for taking time to stop and send good wishes to our little doll. We are so humbled by each and every one who reaches out....He is an amazing little doll.

Angels are on the way to you this morning ps


pstraubie48 profile image

pstraubie48 3 weeks ago from sunny Florida Author

Thank you Peggy...we are so blessed and so grateful to have so many who care about this little man. We just keep hoping we can find a way to provide for all of his needs.

Angels are on the way to you, dear Lady, for your kindness.

Angels are on the way to you this morning ps


pstraubie48 profile image

pstraubie48 3 weeks ago from sunny Florida Author

Thank you, always exploring--- this week is a big week. All good wishes and good thoughts are needed and appreciated.

Hugs and Angels on the way to you ps


pstraubie48 profile image

pstraubie48 3 weeks ago from sunny Florida Author

He is a precious little guy, for sure. We are so blessed that he came into our lives and we are doing everything to help him begin to gain weight and be on the road to recovery. He has so many issues for a little guy that it is amazing to us how well he handles all of this.

thank you so much for your thoughtfulness in stopping to read and comment. Angels once again are headed to you ps


bravewarrior profile image

bravewarrior 5 weeks ago from Central Florida

Patricia, my heart breaks for you, Heston and all of his family. What's amazing is how positive he is despite his illness and hindrances. I'm sure he's an inspiration to you all to remain strong and keep up the good fight.

My prayers are with you and sending positive energy your way.


Peggy W profile image

Peggy W 5 weeks ago from Houston, Texas

Your precious little grandson is enduring so much and it is heartbreaking to know about it. Will definitely keep him in my prayers and will send another small check your way. Keeping you in my prayers as well! Why some people have to suffer so much in this life will undoubtedly be answered when we get to the next one. Bless you and your entire family!


always exploring profile image

always exploring 5 weeks ago from Southern Illinois

Patricia, I still pray for Heston nightly. God bless you and the family...


colorfulone profile image

colorfulone 5 weeks ago from Minnesota

Heston Wayne, is adorable, Patricia. My prayers and thoughts are with him and the family. I wish I could give you a huge right now m'dear. It is terrible how healthcare costs increase and the deductibles are so high.

God bless.


pstraubie48 profile image

pstraubie48 5 weeks ago from sunny Florida Author

Walking with Heston Wayne through his journey is deja vu as we walked a very similar walk with my eldest grandson, Jay. We were told time and time again he would not survive past age 6, 9,, 13....but God is in the house and he is still on the planet and he is 21!!!! So we remain ever hopeful that answers can be found to help him gain weight and that his other medical concerns can be addressed in a timely manner.

Angels are on the way today...thank you for stopping by ps


DDE profile image

DDE 5 weeks ago from Dubrovnik, Croatia

Heston is courageous and so sweet. To go through so much is such a journey for him.


pstraubie48 profile image

pstraubie48 5 weeks ago from sunny Florida Author

We are so blessed, Theresa....God is indeed carrying us up and over the difficult times. We are concerned but keep our eye on God's promises.

Hoping all is well with you...I think of you often.

Blessings and many Angels headed to you and your family. ps


Faith Reaper profile image

Faith Reaper 5 weeks ago from southern USA

Bless his precious little heart. Thank you for keeping us posted on this difficult journey and your sweet Heston, Patricia. I am stepping up my prayers!

He is such an adorable child and a strong little fighter too.

I'm sorry I missed this one some how and thankful you visited my page to prompt me to check here.

It is evident just how loved he is in this life. May God continue to give you the strength to continue to persevere through these trials.

Hugs and much love and Angels already there as always


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

O Nell...we are so thankful for your good thoughts. We treasure every day and hope answers come soon.

Angels are on the way to you this evening. ps


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

So very appreciative Blossom of your kind words. We are so thankful for all of the good vibes and prayers that come our way.

Angels are headed to you this evening. ps


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

Thank you so very much, Happymommy. We feel surrounded by God's love.

We remain hopeful that answers will come.

Angels are headed your way this afternoon. ps


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

O Hi Rachel...thank you, dear lady, for your kind words. Please if you can, share this message with your friends too. We need help.

Know that hugs and Angels are headed your way this morning ps


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

O Dreamer Meg....I do so wish I could have/be writing about something else but I do so adore him and want to get the word out as we need help to provide his medical care.

Angels are once again on the way to you ps


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

Thank you, JG....we are so thankful for all prayers....and I do have to agree...he is adorable....He is a joy--it breaks my heart to see him in pain and not well.

Know that Angels and prayers are on the way to you ps


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

Thank you always exploring for your kindness and for sharing his needs at church. We do so each Sunday at our church and many are praying. I do so believe in the power of prayer...we have seen it work!!!

Prayers and Angels are on the way to you this morning. ps


pstraubie48 profile image

pstraubie48 6 weeks ago from sunny Florida Author

Thank you for the prayers, Ms. Dora. We can feel the love and are so thankful for your concern and for God's strength and power.

Angels are on the way to you this morning. ps


MsDora profile image

MsDora 6 weeks ago from The Caribbean

What a precious little boy! Sent up a prayer that God will strengthen him, you and all the family and that God's favor will smile on the entire situation.


Happymommy2520 profile image

Happymommy2520 7 weeks ago from East Coast

I remember reading about your grandson a few months ago. I will be sure to light a candle for him this week when I go to mass. I will also check out your donation page. Lots of luck!


Nell Rose profile image

Nell Rose 7 weeks ago from England

I feel the same as Bill, its so hard to read something like this, but I can only hope and say prayers for the little man, xx


BlossomSB profile image

BlossomSB 7 weeks ago from Victoria, Australia

What a stressful time you are all going through! Thank you for sharing it, my prayers are with you.


Rachel L Alba profile image

Rachel L Alba 7 weeks ago from Every Day Cooking and Baking

Hi Pat, Of course, I will continue to pray for Heston and your family. He will be before me in prayer and thoughts. I believe he is the angel in your family.

Many blessings to you and yours.


pstraubie48 profile image

pstraubie48 7 weeks ago from sunny Florida Author

Thank you, Bob. We feel so blessed to know others care so much about him. How fortunate we are!!! Angels are on the way to you today. ps


DreamerMeg profile image

DreamerMeg 7 weeks ago from Northern Ireland

So hard to see a child suffering like this. It's just not fair! It's also very hard on those around to see their loved one so ill. You write so eloquently about this but I am sure you wish you didn't have to know about it.


JG Hemlock profile image

JG Hemlock 7 weeks ago from VISIONS AND DREAMS

Praying today for Heston that he will receive a mighty miracle and that your family will be blessed with financial abundance above what you need, and poured over the cup. He is adorable!


always exploring profile image

always exploring 7 weeks ago from Southern Illinois

Patricia, I am so sorry that Heston has developed this heart condition. I know it is a dark time for you and the family. My prayers are still with you and family. I shared your last post on Facebook and will this one. I will include his name in our prayers at church for divine healing. Hugs my friend.


pstraubie48 profile image

pstraubie48 7 weeks ago from sunny Florida Author

Thank you, bil, for stopping to read even though you did not want to...we just do not know what to think....but we remain hopeful. Thank you too for praying for him and when I see him I will deliver you HUG. Yes, indeed...the Angels are hard at work. And know that many Angels are headed to you and Bev. ps


billybuc profile image

billybuc 7 weeks ago from Olympia, WA

This is one of those articles I really didn't want to read, and I'm sure you understand. All I can do is pray for this little guy, and send you the biggest hug possible. The angels are working overtime for him, dear friend.


Bob Bamberg profile image

Bob Bamberg 7 weeks ago from Southeastern Massachusetts

Thanks for the update, Patricia. Heston was in my thoughts recently, and more thoughts, prayers and pennies are coming. Regards, Bob

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