Life without Food

DaysLady

DaysLady

Well-Known Member
Joined
May 27, 2009
Messages
2,148
Reaction score
7,738
Location
South Carolina
Website
www.fromthepicklejar.blogspot.com
I need continued prayers for my sweet nephew Bradley please. I have told you his story about being diagnosed with Eosinophylic Esophagitis (EoE) and he received some heart breaking news yesterday. Next month, he'll have surgery to put in place a feeding tube where he will be fed a special formula directly to his stomach from now on. Food is too painful on his esophagus. He will not be allowed to eat food for a very long time (possibly several years)... if they can get it under control, he may be allowed 1 or 2 foods by mouth (most likely rice or something like that).

When you sit down to eat a snack or a meal today---- Remember to pray to God and thank Him for your food... and also remember to thank God for a body that allows you to eat it. Never take one single bite for granted.

Eosinopohylic Esophagitis ~ Hard to say, even harder to live with.
Yesterday, Bradley sat on the beach and cried. Instead of playing, he mourned his loss of food. He is 7 years old, will be 8 just before the surgery. Pray for his heart to heal - he needs healing both physically and emotionally. My heart is broken for my B-rad. Sweet baby boy, if Aunt Stephy could take your place, I would in a heartbeat.

Here is his mother's blog about yesterday's doctor visit:
http://www.brandislifesong.blogspot.com/2014/01/life-without-food.html
 
here is a video of a young lady just like Bradley. Her videos give me hope.
which reminds me of a quote: "The capacity for hope is the most significant fact of life. It provides human beings with a sense of destination and the energy to get started." ~Norman Cousins
 
someone asked me today how long Bradley's life expectancy is. I broke down in tears and just cried (the person who asked felt terrible and hugged me)...but honestly- that's a big question I had. So I turned to the internet, surely someone had an answer. I found a website with both good news and bad news. Good news, they think with the new age treatments, he should live a long life. Bad news, no one can tell just how long because it was only recently (within the past decade) discovered what this disease was and given a name. In fact, Bradley is a member of the generation that will answer this question. When this generation begins to pass away, only then will doctors know an expected life expectancy. It is literally in God's hands. God- I ask that "long" is long enough for us to understand, long enough for him to grow up and lead a some what normal life. I pray this generation is proof that a person with EoE can live just as long as anybody else. In Jesus' name, Amen

here is an article I found that is very helpful to anyone trying to learn more about EoE:
http://www.chop.edu/service/center-...c-disorders/about-eosinophilic-disorders.html
 
Thanks for the update DaysLady. I'll keep him in my thoughts and prayers. I know the internet is tempting for info but try to also take what you read with a grain of salt. However, I do hope your family is able to find some online or in-person support groups for this type of illness. Those can be very valuable. I'm also part of a generation of "guinea pigs" for a particular birth defect and I've learned that no 2 people have the exact same medical experience. Medical technology is very advanced these days so I'm sure Bradley has excellent care. There are always second opinions out there too. I hope this perspective can help you in some way.
 
I'm so sorry to hear this Dayslady. I know this has to be sooo difficult for Bradley to understand too. Thoughts and prayers are being said for Bradley and the rest of the family.
 
SO.. here is a little bit of an update. leading up to surgery to put his feeding tube in place, Bradley was told that a cloth cover would go over his feeding tube port (Bradley calls his port his button). Bradley also gets to design what image will be printed on the cloth - Bradley wants legos so his mommy is working on a design of the EoE ribbon made of legos or something like that...

2 things are happening:
1- When Bradley gets his feeding tube, his stuffed bulldog (which was a Christmas present from all the nurses that care for him)... the stuffed dog is also going into surgery to get his own special feeding tube.
2- Uncle Eric (my husband) is getting a tattoo. It will be in the same spot as Bradley's feeding tube...and it will be designed to look just like Bradley's "button". Bradley will not be the only one with a special "port". :)

Bradley was baptized yesterday. He had written a letter to his Pastor asking for baptism. He is so mature for his age- I am one proud Aunt.
And after many tears and prayers, I find peace with what is happening to my nephew. I also have faith that for the first time in Bradley's life, he will be fed and will be full. He has never been full- food just hurts too much and becomes too unbearable... so when he gets the feeding tube in... his body will be fed in a way it never has been before. And my excitement and joy over the filling of my nephew's belly... helps counter act the fear and sadness of what his life will be like during and after surgery. The Lord says so many times throughout the Bible "Do not be afraid." "Come and follow me.".... so- we will be leaving what we know behind, and following him. Let's do this!

Bradley is also finding the silver lining to the cloud... He smiled really big and said "Hey mom, this means you can't make me eat my green beans ever again!".... his mom simply replied, "you're right son! no more green beans!". :) this makes a 7 year old boy a little bit happier. :)
 
DaysLady - Prayers will continue for your amazing nephew, Bradley. Based on what you have written, he has a very caring and involved support system, as well as an upbeat attitude and intelligence far beyond his years. I agree with Heather4CU...no two medical diagnoses are ever the same, so please do not compare Bradley's particular condition against anyone else's. HOPE is one of the best four-letter words we have!:hug:
 
Thank you all so much for your prayers. My sister in law says currently there's an insurance hold up- getting medicaid to pick him up completely (they have picked up his formula that will go into the feeding tube, but apparently the doctors have not been cleared for the surgery)...she should know something this week or next- as soon as she has a date set for the surgery, I'll post here so that you all can pray for Bradley that day.
Thanks again!
 
While my parents were with me, and could still do this, they dreamed of retirement, and then mom developed Lou Gehrig's desease, or ALS, and after over 55 years of marriage, and dreaming of their retirement, Dad retired, mom got bad enough that in order for her to remain in her home with my constant care, they put a feeding tube into her stomach too, and while they would go from one place to another, Dad would tell me what they went through when he would run in and get something to eat, and look out as to where he parked the car, and there would be my mother feeding herself,,, he was always so sad, and all because of my poor mom. She was wonderful, never complained, and would just tell me, "Well it is time for my Num Nums.... and poddle off and feed herself...

I pray that the feeding tube is an answer to your family's prayer too. I pray that the nourishment he will gain, and the contentment he gains, that he will do his growing, and prospering. He will be back on my prayer list, Days Lady, and will look forward to further updates... Thanks for the present update, and for allowing us to assist you, by prayers.angel hiding.gifHere is a Pocket Angel, and will watch over all of you, and she is always there. I call mine stitches, and it is so reassuring to have her with you.....
 
thank you everyone for your continued prayers. On Friday- the hospital in Charleston called to let us know that the insurance FINALLY went through and they had an appointment available Wednesday (2/12/14) for my sister in law and Bradley to talk to the nutritionist that will be providing the formula to go into the tube and also to schedule the surgery. We've waited for this for a very long time....and on top of it all, we're supposed to get the worst snow storm of the decade this week. (I remind you, I'm in the south- we shut down at the threat of a flake of snow.. and it's supposed to be the worst Tuesday night and Wednesday). If we are unable to get to his appointment, it will be postponed to next week... I know it's only a week, but we have had a hard time coping with this. Made a "Bradley safe" cake for him this weekend, it's the last birthday cake he will ever be allowed to have. We're all exhausted and ready for this to happen and I just want this storm to go away and let us take care of Bradley without delay. Also- this week is Feeding Tube Awareness week. :) So we need to do this Wednesday! THIS Wednesday, NOT next! I love snow...but for once, I'm praying it will just go away! (OR at least go away for the lower half of the state where Bradley lives and is treated.)

 
thank you so much Katt. That's one of the hardest things for us to witness. He gets so angry and sad and upset - he wants to eat, he is hungry, but food hurts. and now with the tube, even the few things he was allowed to eat before that he had grown to like...are being taken away from him. He is 8 years old, and still wearing size 6 clothes. :( same outfits for 2 years..he is not growing because we can't feed him. It's such a frustrating disease. He is just like any adult, we all get frustrated when we are hurting and can't eat. Prayers for his peace and acceptance are definitely what he needs most. I can't post pics at work- but I will try to find time to do it this evening. I have a sweet picture of Bradley, myself and my daughter at church yesterday. :) It was moments before his eyes were hurting to much and he had to go lay down.
 
You must log in or register to reply here.
Back
Top