Okay–I know a lot of people might think this is kind of spacey, but I could really really use some hopeful thoughts, good vibes, and prayers for my young cousin AJ.
He is six years old. When he was born his intestines were on the outside of his body (I don’t know the medical term). He went through a dozen repair surgeries before his bowel was determined a total loss due to scar-tissue buildup and surgical trauma. After a TON of fundraising and a little outright begging, his mom took him to Kansas for a small bowel transplant. The transplant went well, and for a while he seemed really improved. He was even starting to actually EAT (he’s had a feeding tube in his belly since birth). He needed a couple more surgeries to tweak the implant but things looked good. The last few months he’s begun a slow slide back down into problems, to the point where a second transplant was being considered. Unfortunately, the doctors don’t feel he is a viable candidate and have basically sent him home to die, or—a one in a hundred chance–improve enough on his own to go through yet another surgical procedure. Last count was nearly two-dozen times this boy has been under the knife. I just heard from my mom that he’s back in intensive care. He’s developed some kind of full-body infection that had him delirious and incoherent. The doctors have diagnosed pneumonia, but aren’t promising that that is the only problem. I’m so afraid for him. This kid is smart, friendly, and so good-natured about his situation that it breaks your heart. I’ve seen him sit patiently joking and smiling while his mother cleans his feeding tube at an age when most kids won’t sit still for anything. His mother is the strongest person I know, but even she is starting to lose hope.
If you’re a religious person–I know both AJ and his mom would appreciate being in your prayers tonight. If you’re not religious but can just spare some good thoughts and hope–we could use those too.
Thank you
I am praying for AJ and agreeing with all the positive thoughts and prayers here. Please let them know we are all praying and I hope that gives them at least a little bit of comfort in this difficult time.
Many thanks to all of you. I think I’m going to email AJ’s mom a link to this page. It’s so hard to find the words to let people know how much you want to help, especially when there’s nothing really you can do to help…
I’ll keep you updated as things develop.
Just curious, are both of his intestines beyond repair? Because I know you can live just fine without a large intestine - my brother has done so for ten years.
Either way, I’m sending good vibes and hoping for the best for the boy.
I’ll be saying a prayer tonight at candle burning, and requesting his name in at next circle.
May Yaway in all His glory see your cousin and his family to health and happiness. (That includes you too Bella)
Blessings to all the other posters for thier prayers as well.
tsarina–AFAIK his large intestine is Ok. Unfortunately, the problems have all been with the small intestine/lower bowel which pretty much means he’s incapable of digestion.
From what I gather, the transplant surgery is still new enough that quite a few improvments have been made in the technique just in the few years since he received his donor bowel. What it basically has come down to is that he has one more shot at a transplant, after which he’ll be ineligible for another (whether this is for medical or transplant-policy reasons his mom hasn’t said). Because it’s his last chance, the doctors are not willing to do the operation unless he is in peak condition otherwise. The rejection rate increases with a second transplant, and they don’t want to risk wasting the organ on a sick when it could go to a healthy one who’s got a better chance of making it long enough to get some use out of it. It makes sense from an objective standpoint, but it sure is hard to accept from an emotional one.
Thanks again to everyone, keep your fingers crossed.
What a rough thing for everyone in your family to go through. His mom must be a really strong person, and he sounds like an angel in disguise. Prayers and good thoughts will continue to be on their way.