The Fight of His Life Continues: My Six Year Old Grandson Continues His Fight~A Photo Journal
A Disappointing trip to Ohio
While we remain hopeful and optimistic about possible help for Heston Wayne the trip to the hospital in Ohio yielded more questions and revealed more issues that he has.
First he was found to have chiari maformation... a condition in which (in its most simple terms) part of the brain extends down into the spinal cord. Tests were performed while he was there and possible surgery was considered. He had gone to have a gastric pacemaker placed but after almost ten days there and much blood work it was determined he is too weak to have any type of surgery at this time. His situation will be revisited in 6 months with intensive bloodwork every three weeks in the meantime.
So as I stated at the onset we are disappointed that some help could not be provided but are so thankful that the doctors (a team of 11) are so thorough and so cautious. My daughter was advised that he had an 85 percent chance of a stroke because his clotting factors are so poor.
It was also determined that he has PNH....a condition in which the red blood corpuscles are destroyed blood clots form and bone marrow functioning is poor. Heston's bone marrow is already sub-par. Treatment for this condition is to begin if insurance will pay for the medication. Much more information is provided in the link that follows.
Heston Wayne...waiting at Children's Hospital in Cincinnati, Ohio
In Cincinnati...more questions than answers
My daughter and Heston Wayne arrived in Cincinnati last Sunday and it has been quite a time since then. Doctors performed a two and one half hour MRI today to determine if he has Chiari Malformation...in simplest terms it would mean that he has a tethered spinal cord...part of his brain has extended down into his spinal cord. The medical team consisting of eleven doctors are conferring and studying the MRI to determine the best course of action for him.
Asking for positive energy and many prayers for our family. And know that Angels are on the way to each of you.
In search of answers
On this Saturday evening just as I begin to 'pen' these words, my daughter, Stef, and youngest grandson, Heston Wayne are heading out to Cincinnati in search of some answers for Little Man.
Heston Wayne has a new wrinkle in his body...actually it is not new....it is just being identified. He has a sacral dimple. It is just what it sounds like...it is a dimple at the sacrum area of the body. He was born with it as are many others who have them. However in his case it has become problematic and has begun to affect his colon. As I am not a doctor I will not go in to great detail trying to explain this but it is concerning enough that he has been sent to a neurosurgeon in Cincinnati to evaluate and assess if something can be done to help him.
Hess continues to lose weight even though he is on the gj tube. He spends many many nights awake and in pain due to issues with his little tummy and colon. So once again answers are being sought. One of his biggest problems is that he has trouble eliminating waste from his body which is indeed a huge concern.
When they return from Ohio they will be home for a short stay and then travel to Atlanta to see doctors there in hopes that a gastric pacemaker can be placed. It is possible to have it hooked up to him via the stoma so surgery may not be needed which is so important. The less Heston Wayne has to go under anesthesia the better as he has a weak heart.
In the midst of all of his medical concerns, his Momma had a heart attack three weeks ago. It was mild but concerning nevertheless. She is under a great deal of stress (although she would never tell you that herself) so it is not surprising that it happened...she has had six before this one. She is on 24/7 telemetry and that is how this one was detected. She has been put on additional medication to help stave off more episodes.
Many people say to me: How do you deal with this? You all have so much on your plate....and my reply is the same each time....we ALL have stuff.....our stuff is just different stuff. It is about choices....choose to live in fear and sadness and sorrow and darkness....or, embrace today.....every single minute of every day is so precious to us....we text and call and visit very often. I will be traveling with them (via phone and text and facetime and all) as they make this journey. So to those of you who are walking this same walk with someone you love, know you are thought of and that Angels are coming your way...some are divine and some are as close as arm's length.
Heston Wayne....his Momma....and his Bubbie, Jay.....they smile come rain or come shine....
Happy New Year, everyone. As I look at the title of this hub I am so very thankful that Little Man continues his fight. New issues have come his way...he will need to travel to Ohio to see a neurosurgeon who specializes in the type of surgery he will require. That will be in about 2 or 3 months as the doctor takes patients from around the world and is working him in.
In a week or so Heston Wayne will go in for another bone marrow biopsy and to have other surgery. When it occurs I will update once again.
You who are taking the time to read and comment must know how blessed we feel to have the love and concern that you show this precious child. The words 'thank you' do not seem adequate to express how we feel....we do say THANK YOU and try to extend the same kind of love and concern for others.
Please know that Angels are on the way to you this very day.
Update....November 27 Heston Wayne at Nemours Hospital in Orlando
Once again Heston Wayne and his Momma are at Nemours in Orlando. He is having two surgeries and a colonoscopy. One of the surgeries we have waited 8 months to get approval for from the insurance company. In this procedure, Doctors will remove his gj tube and hook him up to a machine that will measure the motility in his colon. His stomach has stopped working almost totally. And because he is having so much stomach pain and inability to keep food down if he does eat anything by mouth doctors are concerned that his colon may be beginning to shut down.
The day after he has this procedure he will have a new gj tube placed and sometime during this week he will have the colonoscopy. We pray that answers are found. He continues to lose weight and the need for the bone marrow transplant increases each day.
This is his new normal when he goes out...he used to run and play but now has so little energy that his play outside is usually ten minutes or less.
Heston Wayne ....headed out with his Momma to attend the funeral of a friend who died from the same illness he has.
Heston Wayne ....rarely do you see him without a smile...he inspires us every single day
Heston Wayne tucked in as he and Momma go out for the day
Heston Wayne Faces New Challenges
We were so optimistic that the gj tube would help our precious Heston Wayne to begin to gain weight. But alas, he is having great difficulty with motility and is barely able to receive enough formula to sustain his body.
In addition the need for a bone marrow transplant grows increasingly more a need than it has been. We are actively looking for a donor so if you can please go to DKMS.org to see how easy it is to become a donor.
We need to get more help for this little man and are trying to get him back to Boston for additional treatment.
Scary time with Little Man
Not too many weeks ago Heston Wayne was hospitalized for almost two weeks with a horrid infection, the source of which was not determined. At one point they were looking for sepsis...and I shuddered.
He was very very ill at that point but somehow his fragile little body was able to rally once again and fight off the illness. The care he received and receives at Nemours Hospital in Orlando is the best. He is watched over and cared for in a way that helps us to feel his concerns are being met.
The need for a bone marrow transplant is becoming more and more urgent. No donor that is suitable has been found...but we feel confident one will be found.
At present a golf tournament is being organized and will be held in November. The unpaid bills at Nemours ....things not covered by insurance....total over seventeen thousand dollars...so...if you want to come to Florida to play or you live in Florida...let me know and I will get you a slot.
Thank you as always for your prayers and good wishes and support. Angels are on the way.
More reasons to be thankful
So often I asked as is my daughter how do you continue to speak of thankfulness and joy? The answer is easy....because despite so many dire predictions my grandsons both of them and my daughter are still on the planet.
Despite all that has come their way they are here to embrace another day.
As of this time, I have not shared the most recent development with my daughter. and while this hub is about my grandson she is a major player in his life.
She was told about ten weeks ago or so that she has leukemia and has only two to three years left on the planet. That on top of the other cancers and serious heart disease as well as MS....one is enough to have killed off many of us already. And she has been told many times over the last 15 years or so that she needed to party like a rock star as her time was short.
And God has kept her here. So...one more mountain...she has good days and not so good days but Heston Wayne's needs (and the needs of his brother from time to time) keeps her focused on them and on LIVING not on leaving the planet.
June 19, 2017 part 1
Our journey continues.
Heston Wayne celebrated his 7th birthday a few weeks back...it was a fun day for him to be a little kid. Often he is not a little kid living a 'normal' life...but you would not know it. His life with the jg tube and the distended belly, the sleepless nights filled with pain, the many almost daily bouts with nausea and subsequent vomiting are his new normal. He complains little and does not question why this happened to him.
He becomes very philosophical at times with deep probing questions about death, what it will be like when he leaves the planet, totally unprompted by anyone...he just wonders....He is a happy child ....and he fills the room with his joy....that may sound contradictory...but he does not dear death....just wants to understand it. And his Momma answers him....the words come...but she smiles and reassures him he is not going anywhere for a long time.
He is enchanted by rainbows ...I think I may have mentioned that in earlier posts....he lights up all over when he sees one.
His Momma told him that when he needs one most, one will appear, and that has often happened!!!
In a week he will go in for a new jg tube...they are supposed to be replaced every three month but his have been replaced more often due to unforeseen complications. So about the 26th of this month, if you have a few minutes for extra prayers and sending of positive energy, can you send some his way, please, and thank you?
Little Man's Smile Lights up a Room and Our Hearts
June 19, 2017 part 2
My Stef has new medical concerns that are of a serious nature. I am not able to disclose those at this time. But, and there is almost always a "but"...she remains the determined Momma who cares for her sons...both of them (as Jay who is now a young man is besought by complicated medical issues and concerns of his own).
She soldiers on ....despite great pain and in the face of adversity that few are able to handle. I am her Momma so of course I think that she is amazing but others say the same of her....she just as her boys is an inspiration to us on a daily basis.
Our lives are filled with many obstacles ....and we can choose to find a way to make sense of what we face as we make this journey or to give up and give in....the first of these choices is the one we, as a family, have chosen.
Please once again, pray for and send positive energy to my Stef if you will. and thank you.
Getting Ready for the Day...tube is out for a bit this morning
Following is what I have just posted on gofundme...
Here is what is now happening with our little man.... Heston will be undergoing 3 procedures in June .. Inpatient procedures and we will be in for several days .. In the mean time we are adjusting formula for his feeding tube as he is still having issues with weight gain and his motility so we are combatting all of that ..
He will be getting an adapted stroller not a wheelchair as he couldn't get himself around anyway. So we are waiting on the insurance approval for that ,we are hoping they will approve it because we need something to accommodate his pump and such he has just simply out grown his jogger stroller.There are days he just has no energy at all to walk and those are the days we need it .. His good days though we encourage all the running and playing he can muster up. Hard to believe he will be 7 in just about a month's time .This past year has certainly been whirlwind but a blessing as well .. Had we not asked for a second we would not be on this path to one day getting him all he needs to celebrate many many more birthdays..
And now his Momma has new serious medical issues...Sssh,she wouldn't want me to tell you.... Thank you thank you so very much for helping.
Stimulation of Bone Marrow Begins
This past week, Heston Wayne was given his first injection in an effort to stimulate his bone marrow. He felt unwell for several days afterward and slept most of the days that followed.
Active searches are underway for a match for Heston Wayne. I will be posting photos of him at events where he has been to help find a match.
Please share this article with others....the family needs help financially and in their search for marrow.
And thank you.
Update February 20 Most Recent Hospital Visit
This week was a stressful week....God carries us through the times...I am sure of it. If we did not have His strength, I KNOW that we would not weather this storm. He carried us and still carries us through Stef's illness and Jay's...both of whom are still very ill.
This week Heston Wayne had a bilateral bone marrow biopsy...trying to determine how much closer he is to needing a transplant. The plan was also to rule out other illnesses that may be lurking within.
He also had a new gj tube placed as they must be changed every 3 months.
He was given a new tube which is a way for any food that goes into his tummy to pass out of his body...about a 4 hour process. He is surviving on the formula he receives through his gj tube. His tummy cannot handle food...his tummy becomes so distended it is in danger of rupturing that is the reason for this new tube.
So...this is where we are ....Heston Wayne is very fragile. So please send prayers and Angels to him and to the family.
Their financial situation is difficult as there is much insurance does not cover. So please share this hub to your social media sites. And thank you.
We are so extremely appreciative of the concern and generosity of those of you here on HubPages.
Will keep you updated.
Baby doll in ICU after attempt at ablation
A few hours later...in ICU...
Little Man faces new issues...
Let me begin by stating that Little Man, Heston Wayne, inspires us every day.
He has had more than many of us will face in our lifetime. Make no mistake about it...I know, we know, that many families across this nation and around the world face catastrophic, on-going illness ...we know that we belong to a group that we wish we do not...but the fact remains that we do. So we have chosen to embrace each day as that is what we have been given...today, these 24 hours...1, 440 minutes....We treasure each and every one of them.
Those of you who have been to pstraubie48 pages here on HubPages know that my baby grandson, Heston Wayne, is not the only family member to be besieged by illness. His Momma and his elder brother both have serious medical issues...their stories are here on HubPages...and those medical conditions continue to mount. That is perhaps why we are able to process as best as our minds can possibly do this journey Little Man is on.
What is a cardiac ablation?
According to Mayo Clinic...."Cardiac ablation is a procedure that can correct heart rhythm problems (arrhythmias).
Cardiac ablation works by scarring or destroying tissue in your heart that triggers or sustains an abnormal heart rhythm. In some cases, cardiac ablation prevents abnormal electrical signals from entering your heart and, thus, stops the arrhythmia.
Cardiac ablation usually uses long, flexible tubes (catheters) inserted through a vein or artery in your groin and threaded to your heart to deliver energy in the form of heat or extreme cold to modify the tissues in your heart that cause an arrhythmia."
His little body continues to be assaulted
It is now January 27th....this week has been filled with another trip to the hospital and another time for Heston Wayne to be under anesthesia.
He has SVT (supraventricular tachycardia)....his little heart will race and race ....he is often breathless...The plan was to go in and perform a cardiac ablation to help control his problems.
However minutes into the procedure his heart stopped beating, thankfully, only for 23 seconds. It started again on its on...his heart rate was 19 bpm for about 15 minutes. After he was stabilized he was in ICU for about 12 hours and received excellent care. His Momma was there for him as she is each and every day.
He did have an event recorder implanted which downloads his precious little hearts activity every 12 hours. It is 24/7 monitoring for which we are very thankful.
He continues to have major issues with his ability to be nourished. He has motility issues which will be addressed in March...his tummy becomes greatly distended when he has even a glass of milk or a glass of tea and a few chips. The majority of his nourishment comes through the gj tube which is not working very well at this point.
His Momma established "Heston's Heroes" pages ...if you go to the link below you can read a more detailed report on what is happening with our precious baby boy...and yes we call him our baby (but...not so much to him as he, of course, is not a baby in his mind.)
We Thank You
Just know that we are so thankful and feel so very blessed to have the positive energy and prayers of those of you who come to my pages and to Heston's Heroes pages to follow our journey and help us with this journey. Please know that many Angels are on the way to you.
And know that we include each family that has a similar journey in our prayers and send positive energy and good wishes and Angels to each of you also.
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.
This hub gives some in detail information that the present one does not.
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
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),
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.
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
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
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.
Heston Wayne adores rainbows...his Momma told him one will come when he needs it most..and they do!!!!!
"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
Heston Wayne makes his own sunshine....even on his worst day.
He is MY Hero....
All photos in this article are used with permission ....they were taken by Heston Wayne's Momma....sscottdunnam
This is My Profile Photo..He was at Ronald McDonald House last visit to Nemours Hospital in Orlando.
Ocala Florida is his home town...
A Few Months Back when he got the ng tube which was not sufficent
Does someone in your family or someone you know have an illness that requires 24/7 care?
Waves of nausea and vomiting after placement of the tube
© 2016 Patricia Scott