Continuing Our Journey....my Six Year Old Grandson's Fight to Survive--a Pictorial Journal
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.
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
Heston Wayne, this afternoon...so big, so brave
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)
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
Our brave little warrior ...waiting waiting at Boston Children's Hospital
Awaiting examination at Boston Children's Hospital
Heston, at Boston Children's Hospital, just after his bone marrow biopsy
Back home in Florida....Waiting for his tube to be placed
Very tired ....slept most of the day (after ng tube was placed)
Momma and Baby resting after the ng tube was placed
Kind of Waking up after the tube was placed...
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.
Sweet Pea was feeling exasperated after being sick
In the Playroom for a few minutes two days after the ng tube was placed
at home, resting 4 days after NG tube placement
Do you know someone who has or has had an NG tube?
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
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.
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