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Continuing Our Journey....my Six Year Old Grandson's Fight to Survive--a Pictorial Journal

Patricia is someone whose life is centered around family. Each day is one more opportunity to show my loved ones how much they mean to me.

Here is what is happening now.

Feb. 16, 2019

Just since I entered his Momma's account of what is happening in the quoted passage below after spending two weeks in the hospital with him:


''Another day, another specialist and he takes it all in stride. We were just given the news of at least a weeks stay in the hospital for decompression (belly stuff) and an external pacemaker (gastric) being placed. We have 7 more appointments between now and next Thursday and frankly it is a bit tiring but it could be worse, we could be IN already so there is that. Looks like too we will be traveling to New York very soon as we have yet ANOTHER specialist that needs advising. So many maladies wrapped all into one little boy and yet he is still such an amazing kid with an amazing spirit..''

A minute away from hospitals and doctors...February 2019 Science Center Orlando FL

2018 is drawing to a close and we still do not have a bone marrow transplant for him. He's had a hard time this month. But he just soldiers on. I hope that reading about Heston Wayne brings hope and inspiration two others who have children with chronic or catastrophic illnesses. You can live with it. You can make peace with all that's going on. It has taught us to live fully every minute of every day.

Update...November 18th, 2016

First of all, thank you to all who are following our family's journey with my precious grandson, Heston Wayne.

Yesterday he had a gj tube placed. The surgery went as planned, thankfully. He took a bit of time to be weaned off the ventilator but nothing disconcerting happened, again thankfully. He has a serious heart condition so a cardiologist was in the OR during the placement.

He had a long night...lots of pain, more than was predicted, and he is sleeping now. Hoping for them to come home today.

Update...

The links I am providing will give a more detailed account than I will provide but in a nutshell Heston Wayne is truly in a fight for his life...his heart has suffered due to his body's inability to absorb food....and on the 17th of this month he will go in for another surgery which doctors do not like to do because of his now weak heart...this surgery will be to place a jtube next to the g tube...it is identified as a gj tube...the ng tube nor the g tube has worked...he continues to lose weight.

We need help getting word out that this family needs financial support as well as prayers and positive energy coming their way.

Christmas will truly be a celebration of love and family and presents will be from the heart as no money is available this year for those extras. But we have had Christmas celebrations like this in the past and they are among the most memorable.

Please share and if you can please help.

Sorry for the delay in getting on here...there is just so much going on with my daughter and grandson that my time on here is very limited. Your good thoughts and prayers are so very much appreciated.

Angels are on the way to each of you today.




He wears a smile even when he feels less than great

He awakens each morning singing...singing....what a powerful message for each of us.

He awakens each morning singing...singing....what a powerful message for each of us.

Scroll to Continue

Heston Wayne, this afternoon...so big, so brave

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Wish it were better news....

Baby grandson has adjusted to the new way of life with the NG tube but it is not all good, sadly.

He has lost 3 pounds, the exact opposite of why he had the tube placed.

He has malabsorption which I have shared prior. So now the gastroenterologist wants to see if he can determine the cause. There may be some problem with his intestinal tract so this next week, they will explore to see if that is the reason, and see if there is a repair that can be made.

He will also meet with a new nutritionist to see if there is a more powerful liquid formula that he can be given.

The original plan had been for him to have the NG tube for however long and then in a year, a tube would be placed in his tummy, if needed.

The determination has been made that he needs it as soon as possible, it is medically necessary. So, within the next few weeks I will be back to follow up.

The procedure scheduled for today was canceled as the doctor does not want him to have three procedures requiring anesthesia (the placement of the tummy tube and a subsequent follow up to attend to the new tube) as he does not think he is strong enough to endure that much at this time.

Little Man in his Heston's Heroes Shirt (before he had the NG tube placed)

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Heston Wayne is six. He is my youngest grandson and for most of his life he has been sick with first one thing and then another.

For most of the last years he has complained about stomach pain and has had little interest in food. He got to the point in the last year where he associated food with pain so became even less interested in eating. Every time he ate, his tummy became distended to some extent, and the pain was excruciating. There have been many sleepless nights for him and his Momma while she lay awake with him trying to help console him through the pain.


Lots of questions in his mind as he travels by air with his Momma to Boston

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Our brave little warrior ...waiting waiting at Boston Children's Hospital

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Awaiting examination at Boston Children's Hospital

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Heston, at Boston Children's Hospital, just after his bone marrow biopsy

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Back home in Florida....Waiting for his tube to be placed

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Very tired ....slept most of the day (after ng tube was placed)

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Momma and Baby resting after the ng tube was placed

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Kind of Waking up after the tube was placed...

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O, No...this isn't good.. Heston calls his bag (he has one at home) his NUKE bag .....After flushing the line, Heston throws up.

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Sweet Pea was feeling exasperated after being sick

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In the Playroom for a few minutes two days after the ng tube was placed

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at home, resting 4 days after NG tube placement

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It is a journey

It was important for me to come back and share with you what is going on with our Heston Wayne at this time.

We are hopeful that he will gain weight since he has this new way to receive nourishment. No one is certain if this will work but at least an effort is being made to help this little one survive.

Insurance does not pay for everything as you know. Expenses yet to be paid to Boston hospital is just over sixteen and one half thousand dollars. Expenses continue to mount here in Florida as well with over $9500 dollars that have not been covered. Any one of you who have family members (or you) who are ill know how costly medical care is.

Trips back to Boston will be necessary too.

A bone marrow transplant is anticipated but no date has been set for that at this time.

My job, self-appointed job, is to inform and to raise monies to help offset expenses. You can help by donating to gofundme, sending pennies, sending positive energy, and prayers.

A huge way you can help is by sharing the video about penny donations and by sharing this hub on social media.

And know once again that Angels are on the way to you and we are so very thankful for your love and concern.

Even more precious hubbers have sent pennies our way in the form of checks...so you know the amount was more than one penny. However, if many many many folks sent pennies, we would have what we need for this year.

In December the whole process begins again...as the deductible is huge...so this will be an ongoing process for who knows how long.

Baby Heston Wayne Before He Became So sick

Malabsorption is a huge factor

Doctors were unable to decide what was causing his stomach pain He had remained at an almost constant weight for 27 months. He did not gain weight. What he did eat did his body no good. He suffers from malabsorption---he body does not receive nourishment when he would eat, no matter what it was.


What is an NG tube?

According to Mayo Clinic postings: "The tube usually bypasses the mouth and is passed through the nose and into the stomach (nasogastric tube) or through the abdomen directly into the stomach (gastric tube) or intestine (jejunal tube)."

At this time Heston has the tube which runs through his nose to his stomach.

Failure to thrive

His Momma shared this: "It isn't so much that he has lost a lot of weight--- it is only like 2 or 3 lbs but it is the same 2 or 3 lbs He has weighed 17.2 kg=37.92 to 16.2 kg=35.71

This has been the trend for 27 months.. Which gave him the label FTT (Failure to thrive)
He is in the 3rd % for weight and 15 % for height on the national standards growth chart.
I say all the time 17.2 is my arch nemesis because he NEVER EVER goes above that.. Heston even knows now when we go .. He looks and sees 17.2 and will say " ohhhhh mannnnn not again..."

Enjoying Fun Time with Momma....again before he became so very ill

Seeking Answers

Heston Wayne has been introduced to you for years.

There are multiple photos of him here on HubPages in other hubs I have written...not about his illness. I will also post some of the Youtube videos of when he was much younger and had not been stricken by debilitating illness, yet.

Those of you who have followed my posts in the last few months know that Heston is now in bone marrow failure. He traveled to Boston to be seen by a stellar doctor who specializes in Schwachman Diamond syndrome which is what they initially determined he has.

After many tests and much evaluation, it was determined he will probably need a bone marrow transplant at some point and that his nutritional needs were of great concern. It was advised that he have a nasogastric tube (often referred to as NG tube) inserted through which his nutritional needs will be met.

Along the way, he began to have headaches, frequently. No cause was found for those either despite testing and exploration.It seemed that what was causing our baby boy to feel so miserable was not be determined in a timely fashion.Fortunately, a new set of doctors was found and at lightning speed action has been taken.

Hopeful

The trip to Boston occurred in June of this year.-They traveled back to Florida hopeful that the placement of the tube would be life-saving for Heston. Last Wednesday, July 6th, the tube was placed.

He remained in the hospital through Friday afternoon. He and his Momma traveled to their home and we are hopefully on the way to our Little Man showing improvement.

His Momma was cautioned that this may not cause him to gain weight as he suffers from malabsorption and they are uncertain if this will circumvent that. We remain hopeful.

More to come

You can follow what is happening with Heston on Heston's Heroes and know that I will update here periodically as well.

We are so very blessed to have so many who express care and concern for this precious child.

This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.

© 2016 Patricia Scott

Comments

Patricia Scott (author) from North Central Florida on May 10, 2019:

Thank you...we so appreciate your thoughtful words!! Angels headed your way ps

Anita Hasch from Port Elizabeth on May 08, 2019:

My prayers are with you. May he have perfect health soon.

Patricia Scott (author) from North Central Florida on May 08, 2019:

Thank you. He is in hospital today receiving chemo for the first timé. Will stay at RMH for the rest of the week unless something changes. Angels on the way to you. ps

Anita Hasch from Port Elizabeth on April 08, 2019:

Such a cute and brave little boy. Hope he gets healed soon.

Patricia Scott (author) from North Central Florida on April 05, 2019:

THANK you Peggy He really is a doll I will be updating this article soon Hope all is good with you and yours Angels are headed your way this evening ps

Peggy Woods from Houston, Texas on March 26, 2019:

Those are such cute videos of Heston Wayne before he became so ill. He is still a cutie. It is just so sad that he has to suffer so much. We will want answers in the next life as to why this happens. Sending good thoughts and prayers your way.

Patricia Scott (author) from North Central Florida on June 26, 2017:

Thank you Manatita for stopping....Little Man is at the hospital as we 'speak.' He gets a new gj tube every three months. He is having a lot of pain in his tummy since food cannot be digested.

We are always looking for relief for him.

Angels are on the way to you this evening ps

manatita44 from london on June 24, 2017:

Thank you, Patricia.

Great trials! A very cute child. The info is here. Heaven guide and bless you all.

Patricia Scott (author) from North Central Florida on November 14, 2016:

Thank you Norma for stopping to read and comment. He IS brave and is not discouraged because this happened...he gets up every day and soldiers on...bless his little heart.

Angels are on the way to you this early morning that is the beginning of a beautiful day. ps

Norma Lawrence from California on November 13, 2016:

Great Share. So Sad. All your pictures were great. He is a brave little boy.

Thanks for the share.

Patricia Scott (author) from North Central Florida on November 13, 2016:

He really is handling this so very well...just like his brother did when he was young and stricken with a different rare disease. He rarely shows how bad he feels unless it is unbearable pain. Thank you so much Rachel for kind and thoughtful words. This week he goes in for placement of his gj tube so please send along some positive energy and prayers if you will. Angels are once again on the way. ps

Patricia Scott (author) from North Central Florida on November 13, 2016:

Thank you, Anita. He is amazing...and I would say that even if he were not my precious grandson.

This coming week is big week as he gets the gj tube placed since the g tube did not work.

Please send positive energy and prayers. Angels are once again on the way to you ps

Rachel L Alba from Every Day Cooking and Baking on November 08, 2016:

Oh, that precious Angel. You don't even see a sad look on his face. God's grace is truly upon him and seeing him and all of you through this trial. My prayers are with you and hoping he starts putting on some weight soon.

Blessings to you, Pat and all your family.

Anita Hasch from Port Elizabeth on November 07, 2016:

What a brave and cute little boy. I pray for his healing soon. I pray for a Doctor with the right knowledge to enter his life and healing.

Patricia Scott (author) from North Central Florida on November 07, 2016:

Thank you jemuel...I read your message to Heston Wayne and he said to say 'thank you'...and is deeply touched by each one who reaches out to offer words of encouragement.

Angels are on the way to you this morning. ps

Patricia Scott (author) from North Central Florida on November 07, 2016:

Cheeky Kid...all good wishes and thoughts mean so much to us. We continue to be hopeful that answers will come before it is too late...God is in the house.

Angels are once again on the way to you ps

Patricia Scott (author) from North Central Florida on November 07, 2016:

Thank you Shyron for your sweet words...he is an Angel baby child for sure. I got hugs and kisses yesterday...love them. He has surgery this week to place another tube in the hopes it will help him gain some weight...we remain ever hopeful.

Angels are headed your way, sweet Lady. ps

Jemuel from Cebu, Philippines on October 29, 2016:

What a brave little guy you are, Heston! Such amazing boy with very positive outlook in life. I am sending my thoughts and prayers for you. I pray that you will be healed sooner, so you'll play more, enjoy more, and become an inspiration to many people. Thanks for sharing this Patricia! I am looking forward for an update on Heston's recovery.

Cheeky Kid from Milky Way on October 25, 2016:

Wishing him good health and happiness in the days, weeks, and years to come.

Shyron E Shenko from Texas on October 25, 2016:

Still gathering Angels and Prayers to send to you with blessings and hugs. Heston, you are an Angel.

Patricia Scott (author) from North Central Florida on October 25, 2016:

Yes, Sunshine, I have to agree. He does not understand why this happened to him but he does not dwell on it. His life now is his new normal and he gets up every day and brings joy to each of us. When he is in so much pain and feels so rotten, he has us there to love on him. Thank you so much for stopping to read and comment and for the positive thoughts....Angels are headed your way this morning ps

Linda Bilyeu from Orlando, FL on October 24, 2016:

You are a champ, Heston!!! Bless his wonderful heart. Sending you all positive thoughts!!

Patricia Scott (author) from North Central Florida on October 22, 2016:

We receive your gifts, Audrey, and thank you so much. We are so very humbled by the good wishes and positive energy that come our way. He is an amazing child...we continue to be filled with hope.

Angels are once again headed to you and yours. ps

Patricia Scott (author) from North Central Florida on October 22, 2016:

O peachpurple I am writing this comment through tears. My heart is so full of joy that someone who does not know me or my precious grandson except here on HubPages cares enough to send him a hug. And trust me when I tell you he will receive your hug....with God's strength and the love and caring that comes to us from around the world we keep on keeping on.....HOPE reigns in our hearts and in our lives. Thank you so much....I am once again deeply touched.

Angels are headed to your way today bringing many blessings ps

Audrey Howitt from California on August 27, 2016:

What a brave little guy! He seems so very positive and upbeat. Hugs, light and love to you and to your family

peachy from Home Sweet Home on August 21, 2016:

I am so sorry to hear your little grandson is so sick.

I wish that my prayers for your little one will help him to feel better and maybe there might be a miracle.

Don't lose hope, pls hug him on my behalf.

Patricia Scott (author) from North Central Florida on August 16, 2016:

Thank you so much for your kind words. We are so blessed to have so many who care about him...He is amazing!!!! In about 10 days he will have surgery again. Angels are on the way to you this afternoon.ps

Suzie from Carson City on August 15, 2016:

Pat....Damned lump in my throat. I'm glad my fingers can do the talking. What a precious PRECIOUS Angel......I would just love to hug him. Children so often put adults to shame with their strong will, stamina and positive attitude.

My heart is so very much with all of you. It's a helpless feeling when you wish you could do something for someone but are so far away.

Love, Hugs, thoughts and blessings......all coming to you! Paula

Patricia Scott (author) from North Central Florida on August 06, 2016:

We are all so appreciative and thankful for the good wishes you send....Heston has made a little video that I am going to add to this hub so you can hear him say it.

Each day is a gift has been our mantra for so many years and it continues to be...thank you thank you bravewarrior for caring.

Angels are headed your way ps

Shauna L Bowling from Central Florida on August 04, 2016:

My prayers are with Heston and all of you, Patricia. He's such a brave little trooper. I can't imagine going through what he has to endure. And yet he remains positive and cheerful. I hope the doctors can find a cure.

Patricia Scott (author) from North Central Florida on August 01, 2016:

Yes Deb I did and I just sent an email. YOU rock....we are so blessed and so appreciative.

Know that many loving Angels are on the way. ps

Deb Hirt from Stillwater, OK on July 30, 2016:

Hope you received what I mailed you. I still have you and your family in my thoughts.

Patricia Scott (author) from North Central Florida on July 26, 2016:

Thank you, Ms. Dora. We are taking it one day at a time and are uplifted by lovelies like you who stop in and wish us well. This is a big week of testing and decision making for both Heston Wayne and his Momma.

Please know that Angels are on the way to you this morning ps

Dora Weithers from The Caribbean on July 25, 2016:

Yes, Heston is very brave, as are his mother, grandmother and other family members. I cannot help noticing the "Love" plaque in the doorway. Your expressions of faith and family support are encouraging to us as we try to encourage you. Heston and family are on my prayer list now. Will follow.

Patricia Scott (author) from North Central Florida on July 24, 2016:

Thank you, KoffeeKlatch.....we are so appreciative of all good wishes and good vibes. WE remain optimistic and hopeful.

Angels are on the way to you this evening. ps

Patricia Scott (author) from North Central Florida on July 24, 2016:

Thank you, flourish, for your thoughtful comment. We know the matching may be problematic. We are hopeful that when it is time that we will be able to find someone....

Angels are on the way to you ps

Susan Hazelton from Northern New York on July 24, 2016:

Poor baby, to have gone through so much in his short life. Prayers, angels, good wishes, and hugs are being sent your way for you, your family, and especially Heston.

FlourishAnyway from USA on July 22, 2016:

Thinking of you all with hope and encouragement. Stay strong. Since he may be headed for a bone marrow transplant, it may be helpful to encourage people to get registered if they are healthy and eligible.

My husband and I registered as potential bone marrow donors when we were young 20-somethings and I was in grad school and had a friend who was ill. When I became sick with MS, I had to come off the list according to their rules. My husband, however, has been contacted twice since registering for advanced testing as a potential match sick patients in need of his marrow. He accepted the challenge both times, as he is healthy as a horse. Unfortunately, he wasn't a complete enough match in one case and in the other case the potential recipient was too sick to warrant further rounds of testing of my husband.

Patricia Scott (author) from North Central Florida on July 22, 2016:

You are very welcome, Kiss and Tales Angels are once again headed your way. ps

Kiss andTales on July 21, 2016:

Thank you.

Patricia Scott (author) from North Central Florida on July 21, 2016:

you are so precious, Shyron....I will read your message to him....we are so thankful for all of the hugs and good wishes that continue to lift us all up.

Know that hugs and love and many Angels are finding their way to you this evening. ps

Patricia Scott (author) from North Central Florida on July 21, 2016:

Kiss and tales thank you for stopping and for your kind words.

We are so blessed...

Angels are on the way to you this evening. ps

Shyron E Shenko from Texas on July 21, 2016:

Patricia, I will share this in any way I can and I will help in way I can. The angels you have always sent to me

Are gathering blessings and hugs,

To wrap you in their wings

And your family with the love they bring

Tell Heston that, l love him and want him to get well

And tell him all his friends praying together will break the spell.

Many, many Blessings and hugs.

Kiss andTales on July 21, 2016:

I have been on HP some years I must admit I too am a grandmother of many and one great! I may be familiar with your hp name more then you personal. My heart reach out in your love for your grandson .I have 6 young ones I can tell you that it is heart breaking to know any child you love is sick and not just one day but eveyday.

I will think about you in prayer may Jehovah hold you close through these hard times that will soon

Change . He has a time to end it all with complete cures.

Isa 33:24 And no resident will say: “I am sick.” The people dwelling in the land will be pardoned for their error.

And in the last book of God's word we read

Re 21:4 and he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”

Our future is based on a reversal of all the bad things that have happen past and present.

May you and your family know this is just temporary life ahead will be different under Jesus Administration .

Patricia Scott (author) from North Central Florida on July 19, 2016:

Linda Thank you so much for taking time to stop and for sharing. Heston is adjusting nicely to his new normal but has surgery this week to further his progress, we hope.

Hoping all is good with you and thank you for sending all of those Angels when you stopped to visit on my page.

More of those precious Angels are on the way to you this morning ps

Patricia Scott (author) from North Central Florida on July 17, 2016:

You are so precious, Jackie, for taking time to help us when you are having your own journey through difficult waters.That is just it...we all have our journey...each one of us faces off with health issues...we are survivors... love and hope move us onward. Angels are on the way.ps

Patricia Scott (author) from North Central Florida on July 17, 2016:

Thank you so much, Peggy. We are so thankful for your good wishes and for sharing that others may know. We remain hopeful!!! Have a lovely day.Angels are headed your way. ps

Peggy Woods from Houston, Texas on July 16, 2016:

Hi Patricia,

I'll share this with others as I have done with your other hubs so that more prayers and pennies might float your way. It is so sad that your grandson has to endure being so ill. Your entire family suffers. Keep doing what you are doing Patricia. Many blessings!

Linda Crampton from British Columbia, Canada on July 14, 2016:

I am sending you and Heston hugs and keeping you both in my thoughts, Patricia. I'm also sending you all of the angels that you have sent me over time accompanied by my very best wishes for the future. I'll share this article on HubPages and on my social media accounts.

Jackie Lynnley from the beautiful south on July 14, 2016:

He is a beautiful and healthy looking boy I must say but we all know what he goes through and how hard it is on adults much less a child. Having health issues myself right now I am not around as often but I am still putting your pennies hub out there as often as I am here.

All we can do is pray believing and I know you do that. God bless you and yours and know you have the prays and love of a lot of friends. Words are never enough... unless they come from God and we send them back to Him.

Patricia Scott (author) from North Central Florida on July 14, 2016:

Good morning Ruby...so you get it, don't you? You know about this tube ...the discomfort and even pain it can cause but the life-saving benefits of it.

I so appreciate you and your kindness to us. YOU are an Angel.

More Angels are headed your way this morning ps

Patricia Scott (author) from North Central Florida on July 14, 2016:

I know Frank. Our hearts are breaking too that our baby is having to endure this. But we are so so so very thankful that the doctors have taken aggressive steps to help Heston Wayne be on the road to recovery.

Hope does prevail.

I so appreciate your kind words and support ....

Angels are winging their way to you this morning ps

Patricia Scott (author) from North Central Fl