A child shouldn't have to go through this. Your family will be in my thoughts and prayers.

LTG

Wow, that's terrible. Sorry to hear about this diagnosis. The only advice I can offer is make sure to find a children's hospital that does a LOT of these specific surgeries since it's pretty dicey and if they don't do a lot of them (and have built up a LOT of specific experience with this particular surgery), things can go wrong. Fortunately, she got diagnosed early, so the outcomes can be good with successful surgical intervention(s).

It's a bile duct disease. Pouches and bulges interrupt the flow of bile that helps digestion, so it can cause inflammation in the liver, jaundice, and in serious cases if untreated, death. Seems to be genetic. 4x as many girls are diagnosed as boys, and many more Asians than westerners. The one your granddaughter was diagnosed with is super-rare, especially in the west.

In the "normal" one, the thing hanging on the left side is the gall bladder and the thin lines are the bile ducts. In all the other ones, the bulges and pouches are abnormalities of the disease.

Even if you're not sure about getting the surgery covered, I would absolutely try to get her to a place that does these regularly like Boston Children's Hospital or UCSF to get a second opinion, and then work from there. All non-profit hospitals have a program they don't like to advertise where they will cover surgery costs completely if you are below a certain wage threshold. It's part of the requirement to keep their non-profit status.

You can use a list of specialists to try to locate one that does a lot of these surgeries:
https://findexpertmd.com/d/Choledochal_Cyst

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Right. What I'm saying is if you can get to a hospital that does a lot of these with a top doctor, even if the Medicaid won't cover it at that hospital/Dr, if they're a non-profit and the parent(s) income is low enough (which it probably is if the child is covered by Medicaid) you can get the hospital to cover the cost of the treatment through the hospital's non-profit programs.

But I wouldn't worry about any of that now. I'd try to find a hospital that specializes in this disease, or at least manages a lot of surgeries for it and then get an appt with a specialist, then worry about options for the rest later.

I'm not an expert, but it seems like if the surgery is successful, aside from monitoring for changes, that will be it. But that's definitely a question to ask the specialist who knows about the disease and management intimately.

I don't but I will.

I'm a former general surgeon and experienced this during training several times. They are considered premalignant (precancerous). On hepatology and transplant service I took primary for this in a teen. They had medicaid and did just fine, they wanted for nothing.

You have nothing to worry about with respect to getting the best care. Texas has a great residency system (training physicians/surgeons) and any children's hospital will be capable of handling this.

Without medical school and residency training under your belt, I would not go down the rabbit hole of trying to understand why it is and what it is. Just be the loving grandpa and let the surgery team take care of it.

Speculation and perseveration over the details will make you feel worse and the kiddo will pick up on that. There is no point in guessing or what ifs until the pathology report comes back.

Thoughts and prayers are with you, your granddaughter, her parents and the surgery team.

zr1,

You had kinds words for me in another thread when I lost my brother in law. It is obvious how much this little girl means to you.

Please take care of yourself, so you can be there for her. My thoughts and prayers are with you, as well as her...

If you are truly feeling the weight of depression, call the NAMI HelpLine at 800-950-6264 or just log in their site to chat with someone.

I know all of pinside is here for you 24/7. If you need someone to talk to, please PM me and we can chat on the phone... not as a physician and patient but just two pinball enthusiasts.

Hey Brother. Go to Texas Children's Hospital. They have given my children the best care in Houston. My 15-year-old nephew got a staph infection that just about killed him. Texas Childrens doctors saved his life. He was in the hospital 2-3 months. My brother-in-law didn't have insurance, but they still gave my nephew excellent care. Ronald McDonald House also helped them while he was in the hospital.

I am a man of prayer. Jesus has always given me peace in the toughest times I've ever had. I will definitely pray for her, you, and your family. We go to an awesome church on West Lake Houston Parkway in Atascocita across from Iguana Joe's. It's called Northeast Houston Baptist Church. The church isn't about money, power, or control. They are about ministering to the lost and hurting. We have prayer meetings every Tuesday night and 2 services on Sunday mornings. If you need a home church or just want to visit and get prayer for your granddaughter and family, you are most welcome. PM if you are interested in going or if you just want someone local to talk to. I'm happy to be here for you.

Would St Judes be an option? From their advertising it sounds as though families aren’t charged for care there, so the costs would just be the trip and maybe a hotel?

Praying for you and your granddaughter brother!

That is great news, very happy for your grandaughter, you and your family!

Thoughts and prayers will continue for a quick and complete recovery!!

She's young and strong! She'll crush this.

Great news and best wishes going forward. Shes lucky to have someone like you looking out for her.

Have faith in the science. The hospital saved my daughters life at birth. If I lived 100 years ago both her and my wife would have probably passed. My good friend went through a crazy birth experience with his daughter too. It’s amazing what these Dr’s can do.

I’m sending good vibes your way.

My thoughts with you and Josie as well. I echo @luckydogg420, it is amazing the leaps we have made in medicine almost daily and that should give some comfort going into tomorrow.

She is and will be in my Rosary intentions. All will be well, I'm sure.

Praise the Lord for the good report. I'll shift prayer to recovery and dissolving of the remaining polyps. Glad your Little Lady made through this step well!!

So grateful they could remove that. I'll also be praying for peace for all of you. If I can help out with anything let me know.

your in my thought and prayers

As a father of a four-year-old, my stomach dropped just reading that. Hard to imagine what you're going through. But I'm betting on modern medicine. Hang in there.

I didn't know they could turn the pancreas off temporarily. But if they have, she's diabetic when it's off because the pancreas is what makes insulin, so that cause/effect makes sense.

You can drive yourself crazy trying to understand all of the things going on and the possible implications. If you are like me, you can spend hours dwelling on all of the possibilities and worry yourself sick!

Instead, let me give you a well known verse that I find to be helpful in times like these.

Proverbs 3:5-8:
Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths. Do not be wise in your own eyes; fear God and flee from evil. This will be health to your body and nourishment to your bones.

I hope this gives you some comfort. I will be praying for you, your granddaughter and your family.

I wholeheartedly endorse this advice. I’ve been brought out of the rabbit hole of worry more than once by recalling the first two verses in that passage. (The rest is great too!) Even better if you can put it to memory so you can recall it when you start to get into that hole.

I just saw this thread and am praying for your granddaughter and wisdom for the docs.