Update on William with the pancreas problem

• By lilrosa
• Posted September 11, 2008 at 10:25 pm
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I don't know how medicaid can turn down test for kids,but they do. my grandson needed some test that medicaid woudn'nt pay for.he was in the hospital his first 7 months so some test medicaid didn't pay for the doctors sent to other places. he was in birmingham childrens hospital. i know how you feel when your grandson needs a test but you wonder how it will be paid for.we have been told medicaid will not pay for no more test on our little one. when it gets to that place you just have to trust God.

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• By KathyG
• Posted September 11, 2008 at 11:08 pm
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lilrosa,
I have all my trust and faith in God. If not for the Lord I could not get thru the day. It would be nice for medicaid to pay for the test. As of now we don't know the doctor will be in touch by mid-week. I hope that they will pay and if not the test will be done and somehow it will be paid for. I have been thru so many emotions and I know that you have been also. It is so tough but we will get thru everything. I try not to worry but as you know it is easier said than done. Have you tried to get a foundation to sponser your grandson? I am going to call everywhere I can think of if my grandson gets turned down for the test from medicaid. Grandma's have to hang there and be tough for our precious little angels. We also have to stick together. Contact me by messages so that we can help each other and stay in touch. We can give each other support and who knows maybe we can share info with each other. You may know things that I don't and I might know things that you don't. I'm thankful for this website so people can inspire and help one another. May God Bless You and your Family. Take care of yourself..KathyG

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• By lilrosa
• Posted September 12, 2008 at 12:17 am
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I know what you mean about not worrying.My daughter has 3 more kids, too. 3 girls 8, 5, and 2, and the baby he is 15 months old and he is the size of a 4 month old.his name is william. I worry about her she has alot on her hands. I keep the girls for her on weekends alot. but william he has to many machines.he has his oxygen machine, oxcementer machine that registers his oxygen.nebulizer,apnea machine,suctioner, and then he has a feeding tube in his little belly and she has to hook him up to a thing like an iv and he gets so much milk every hour thru the night and he has a port in his side so that if the hospital needs to draw blood or hook him up to iv's they have a place to go in to.I try to help her when I can,but sometimes it is hard. I take care of my mother she is 71 and has dementia and I take care of my 30 year old daughter which is blind and has diebeties insipidus syndrome and some mental problems, when it comes to family I want to do what I can. and yes I worry.I try not too, but I do know God has brought me and my family this far and he will carry us on.What God does for me he wiill do for you.and that is he will make a way. may God bless you and your family.

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• By Kate1
• Posted September 12, 2008 at 9:26 am
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Hi, Kathy. I was wondering if the doctors told you which screening your grandson will receive. There's a basic screening that looks for the most common CF mutations (and usually costs a few hundred dollars, last time I checked). Then there's the full DNA sequencing which can only be done at very specialized facilities (I had mine sent to Ambrigenetics in California) and that is considerably more costly- I think a couple thousand at least. But, that is the one that found my atypical mutation and it is the best screening you can get. I know that you can apply for financial assistance for medical purposes through the CF Foundation (CFF) if you have CF. I'm not sure if they offer assistance for testing or not, or if it's only assistance for those who have been diagnosed. It would be worth looking into and you might get info. at cff.org. I'll actually look around a little bit and see if I can find out anything helpful, and I'll get back to you if I do.

I'm sorry that your grandson won't be going to Duke at this point, but at least it seems as though the doctors are continuing to pursue different options for William. I think of you and your grandson a lot, and I'm pulling for you both to get through this and to get the care that he needs.

Kate

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• By KathyG
• Posted September 13, 2008 at 9:15 am
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lilrosa, You really have your hands full. You are in my heart and prayers. It is very hard to see our children sick and the well ones sometimes don't understand why it's all about the sick child. The sick one is more demanding and the well ones get jealous and think that you love the other more. It's really hard on us grandparents period. I hope that your William and my William get better. Same name, wow. Good luck and stay in touch. Keep the faith and remember that you are not alone the Lord will take care of you and me and your friends at Inspire are thinking about you.
God Bless.....KathyG

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• By KathyG
• Posted September 13, 2008 at 9:22 am
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Kate1, Thank you for all your help. You are my angel sending me all the info that you have and for your inspiration. This may be wrong but if I can remember correctly the doctor mentioned something about c2, whatever that is. You probably know what he was talking about. He was going to do nothing but I got mad and told him since William is having the mucous leakage again that I thought it would justify medicaid paying for the test and for him to do something. I feel like I could punch a few doctors about now and say Wake up. that's bad but you know you go thru emotions all the time. I hope that you are doing well and take care of yourself.. May God Bless You..KathyG

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