Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 is back in the hospital today. He came home from Doernbecker last Friday, 4 days later, back in the hospital in Medford. This roller coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone cope with it?? I wonder if they will decide to do his heart surgery now? well, of course they cant if he is sick. But its a vicious circle. He was supposed to go up to Portland for his appointment with the neurosurgeon on Monday, to see about scheduling the surgery for the skull and the spine, but now I guess that will be postponed again. And how does anyone pay for all of this??? So far, the bills have surpassed a hundred thousand--and that is not even counting the last 3 weeks in the PICU and the airlift to Portland. Insurance is paying very little. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Liz, I am so sorry to hear this about . I can't offer anything more than that ( I am not a parent of a CHARGE child). pam The roller coaster ride is back in the hospital today. He came home from Doernbecker last Friday, 4 days later, back in the hospital in Medford. This roller coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone cope with it?? I wonder if they will decide to do his heart surgery now? well, of course they cant if he is sick. But its a vicious circle. He was supposed to go up to Portland for his appointment with the neurosurgeon on Monday, to see about scheduling the surgery for the skull and the spine, but now I guess that will be postponed again. And how does anyone pay for all of this??? So far, the bills have surpassed a hundred thousand--and that is not even counting the last 3 weeks in the PICU and the airlift to Portland. Insurance is paying very little. Liz CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 I am really sorry to hear that Liz i have charge my self, but if i had a million dollers i would help, but saldly i dont i am praying for you and your son. > > Liz, > I am so sorry to hear this about . I can't offer anything more than that ( I am not a parent of a CHARGE child). > pam > > > The roller coaster ride > > is back in the hospital today. He came home from Doernbecker last > Friday, 4 days later, back in the hospital in Medford. This roller > coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone > cope with it?? I wonder if they will decide to do his heart surgery > now? well, of course they cant if he is sick. But its a vicious circle. > He was supposed to go up to Portland for his appointment with the > neurosurgeon on Monday, to see about scheduling the surgery for the > skull and the spine, but now I guess that will be postponed again. And > how does anyone pay for all of this??? So far, the bills have surpassed > a hundred thousand--and that is not even counting the last 3 weeks in > the PICU and the airlift to Portland. Insurance is paying very little. > > Liz > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Hi Liz, The emotional part is hard. At least for some kids with CHARGE, the hospitalizations become less frequent as they get older. In terms of the financial part, there are social workers in the ICU and part of their job is to help parents find resources to cover the cost of the hospitalizations. I don't know how things work in OR, but in WA there is a state level plan called " the long term care plan. " If a child is hospitalized for a certain number of days continuously (I think it was 30), then you can get a medical coupon as a secondary insurance. The coupon is good for one year, and we didn't have to provide proof of income during that time. Because our son was born at 32 weeks gestation, and hospitalized for his first 14 weeks, his coupon was retroactive to his date of birth. 's parents can also apply for disability for through SSI. There is a federal medical coupon that can be used as a secondary while they are in the hospital (the income levels are really low, so most people can't keep it as an outpatient). Many hospitals have their own " discount " they give, if the family falls below a certain income level (these limits are more generous than those for medical coupons). The bills are staggering. I remember seeing the hospital bill for my son's first 6 weeks in the NICU--it was $365,000! And that didn't include the delivery and it didn't include any of the doctors evaluations (those were billed separately). Our insurance paid for 100% of their allowed amount (I think they paid around $300,000). After awhile, the bills stop shocking you as much--$32,000 here for a surgery and night in the PICU, $1000 there for a synagys shot (that is given monthly, through RSV season). I keep all of my insurance EOBs for Evan--the stack for just this year is over an inch thick! Try to keep in mind that is here with you and his parents--that is the important thing. Everything else is just details. If 's mom and dad haven't done so yet, they should speak with a social worker. When you child is sick in the ICU, you shouldn't have to have the additional worry of finances. (mom to Evan, 15 months--and by my calculation about $750,000 into his $2 million lifetime maximum) pamela.ryan@... wrote: Liz, I am so sorry to hear this about . I can't offer anything more than that ( I am not a parent of a CHARGE child). pam The roller coaster ride is back in the hospital today. He came home from Doernbecker last Friday, 4 days later, back in the hospital in Medford. This roller coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone cope with it?? I wonder if they will decide to do his heart surgery now? well, of course they cant if he is sick. But its a vicious circle. He was supposed to go up to Portland for his appointment with the neurosurgeon on Monday, to see about scheduling the surgery for the skull and the spine, but now I guess that will be postponed again. And how does anyone pay for all of this??? So far, the bills have surpassed a hundred thousand--and that is not even counting the last 3 weeks in the PICU and the airlift to Portland. Insurance is paying very little. Liz CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Liz, Sorry to hear about being in hospital again. It is so hard those early days...it does get better, but that doesn't make it any easier to deal with when you're smack in the middle of it. Hugs & Strength to you all, http://www.chargesyndrome.info > > is back in the hospital today. He came home from Doernbecker last > Friday, 4 days later, back in the hospital in Medford. This roller > coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone > cope with it?? I wonder if they will decide to do his heart surgery > now? well, of course they cant if he is sick. But its a vicious circle. > He was supposed to go up to Portland for his appointment with the > neurosurgeon on Monday, to see about scheduling the surgery for the > skull and the spine, but now I guess that will be postponed again. And > how does anyone pay for all of this??? So far, the bills have surpassed > a hundred thousand--and that is not even counting the last 3 weeks in > the PICU and the airlift to Portland. Insurance is paying very little. > > Liz > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Thank you, that is sweet. Yes, dont we wish we had a million dollars....well actually, a million probably wouldn't be enough. HaHaHa. I am thinking of writing to Oprah and see if she can help...HaHaHa... Check this out, Racheal went to SSI and was " turned down " by somebody who said they had too much money(which is a joke!) and also this person, making those kinds of determinations, did not know ANYTHING about what CHARGE is, and frankly, did not want to know!.I hope she will not give up and continue to fight to get some help for . I would do it myself if I could, but I also don't want to be the " meddling " mother=in=law. Because I have some medical knowledge, I'm already considered annoying by some nurses and doctors that I have come in contact with regarding . I ask too many questions, and sometimes give my opinion. Do you know what I mean? its only because I love him so much, and don't want things to fall through the cracks. Thank you all. Liz -- The roller coaster ride > > is back in the hospital today. He came home from Doernbecker last > Friday, 4 days later, back in the hospital in Medford. This roller > coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone > cope with it?? I wonder if they will decide to do his heart surgery > now? well, of course they cant if he is sick. But its a vicious circle. > He was supposed to go up to Portland for his appointment with the > neurosurgeon on Monday, to see about scheduling the surgery for the > skull and the spine, but now I guess that will be postponed again. And > how does anyone pay for all of this??? So far, the bills have surpassed > a hundred thousand--and that is not even counting the last 3 weeks in > the PICU and the airlift to Portland. Insurance is paying very little. > > Liz > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Liz, has given exellent suggestions for sure. Our experience in Oregon was that information about ways to manage the medical bills was not forthcoming from any sources that were in contact with us. Finally at about the age that Kendra aged out of financial help through the hospital, we were informed the program existed! I think you all may be pleasantly surprised if 's parents talk at length with the social worker. If the social worker is not helpful, do try to speak with another individual such as someone in billing or another social worker or ombudsperson. There will be financial help available; the trick may be in finding it. I am hoping that 's parents were able to stay at Mc House when at Doernbecher. That savings over a hotel is substantial as well. But I think you may have mentioned there was a relative or friend nearby. I hope things improve for really soon. I'm thinking of you all. Mom to Kendra, and Camille The roller coaster ride > is back in the hospital today. He came home from Doernbecker last > Friday, 4 days later, back in the hospital in Medford. This roller > coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone > cope with it?? I wonder if they will decide to do his heart surgery > now? well, of course they cant if he is sick. But its a vicious circle. > He was supposed to go up to Portland for his appointment with the > neurosurgeon on Monday, to see about scheduling the surgery for the > skull and the spine, but now I guess that will be postponed again. And > how does anyone pay for all of this??? So far, the bills have surpassed > a hundred thousand--and that is not even counting the last 3 weeks in > the PICU and the airlift to Portland. Insurance is paying very little. > > Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Hun, I have learned all you can do is take it one day at a time. If you think to much of the future you will drive yourself crazy. Hang in there and I hope things get better soon. Hugs, Crystal mom to (10), (3), and Eva (18 month old CHARGEr) wife to Dan in Illinois > > is back in the hospital today. He came home from Doernbecker last > Friday, 4 days later, back in the hospital in Medford. This roller > coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone > cope with it?? I wonder if they will decide to do his heart surgery > now? well, of course they cant if he is sick. But its a vicious circle. > He was supposed to go up to Portland for his appointment with the > neurosurgeon on Monday, to see about scheduling the surgery for the > skull and the spine, but now I guess that will be postponed again. And > how does anyone pay for all of this??? So far, the bills have surpassed > a hundred thousand--and that is not even counting the last 3 weeks in > the PICU and the airlift to Portland. Insurance is paying very little. > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 GRRRR at ppl who don't know and don't care to learn!!! Cole > > Thank you, that is sweet. Yes, dont we wish we had a million > dollars....well > actually, a million probably wouldn't be enough. HaHaHa. I am thinking of > writing to Oprah and see if she can help...HaHaHa... > Check this out, Racheal went to SSI and was " turned down " by somebody who > said they had too much money(which is a joke!) and also this person, > making > those kinds of determinations, did not know ANYTHING about what CHARGE is, > and frankly, did not want to know!.I hope she will not give up and > continue > to fight to get some help for . I would do it myself if I could, but I > also don't want to be the " meddling " mother=in=law. > Because I have some medical knowledge, I'm already considered annoying by > some nurses and doctors that I have come in contact with regarding . I > ask too many questions, and sometimes give my opinion. Do you know what I > mean? its only because I love him so much, and don't want things to fall > through the cracks. > > Thank you all. > > Liz > > > > -- The roller coaster ride > > > > is back in the hospital today. He came home from Doernbecker > last > > Friday, 4 days later, back in the hospital in Medford. This roller > > coaster ride is soooooooooooooooooooooooooooooooo hard. How does > anyone > > cope with it?? I wonder if they will decide to do his heart > surgery > > now? well, of course they cant if he is sick. But its a vicious > circle. > > He was supposed to go up to Portland for his appointment with the > > neurosurgeon on Monday, to see about scheduling the surgery for > the > > skull and the spine, but now I guess that will be postponed again. > And > > how does anyone pay for all of this??? So far, the bills have > surpassed > > a hundred thousand--and that is not even counting the last 3 weeks > in > > the PICU and the airlift to Portland. Insurance is paying very > little. > > > > Liz > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute > membership in the CHARGE Syndrome Foundation; for information about > the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be > available at www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 crazy the way soem epople r LOL > > Hi Liz, > > The emotional part is hard. At least for some kids with CHARGE, the > hospitalizations become less frequent as they get older. > > In terms of the financial part, there are social workers in the ICU and > part of their job is to help parents find resources to cover the cost of the > hospitalizations. I don't know how things work in OR, but in WA there is a > state level plan called " the long term care plan. " If a child is > hospitalized for a certain number of days continuously (I think it was 30), > then you can get a medical coupon as a secondary insurance. The coupon is > good for one year, and we didn't have to provide proof of income during that > time. Because our son was born at 32 weeks gestation, and hospitalized for > his first 14 weeks, his coupon was retroactive to his date of birth. 's > parents can also apply for disability for through SSI. There is a > federal medical coupon that can be used as a secondary while they are in the > hospital (the income levels are really low, so most people can't keep it as > an outpatient). Many hospitals have their own " discount " they give, if the > family falls > below a certain income level (these limits are more generous than those > for medical coupons). > > The bills are staggering. I remember seeing the hospital bill for my son's > first 6 weeks in the NICU--it was $365,000! And that didn't include the > delivery and it didn't include any of the doctors evaluations (those were > billed separately). Our insurance paid for 100% of their allowed amount (I > think they paid around $300,000). After awhile, the bills stop shocking you > as much--$32,000 here for a surgery and night in the PICU, $1000 there for a > synagys shot (that is given monthly, through RSV season). I keep all of my > insurance EOBs for Evan--the stack for just this year is over an inch thick! > > > Try to keep in mind that is here with you and his parents--that is > the important thing. Everything else is just details. If 's mom and dad > haven't done so yet, they should speak with a social worker. When you child > is sick in the ICU, you shouldn't have to have the additional worry of > finances. > > (mom to Evan, 15 months--and by my calculation about $750,000 into > his $2 million lifetime maximum) > > > > pamela.ryan@... <pamela.ryan%40perkins.org> wrote: > Liz, > I am so sorry to hear this about . I can't offer anything more than > that ( I am not a parent of a CHARGE child). > pam > > The roller coaster ride > > is back in the hospital today. He came home from Doernbecker last > Friday, 4 days later, back in the hospital in Medford. This roller > coaster ride is soooooooooooooooooooooooooooooooo hard. How does anyone > cope with it?? I wonder if they will decide to do his heart surgery > now? well, of course they cant if he is sick. But its a vicious circle. > He was supposed to go up to Portland for his appointment with the > neurosurgeon on Monday, to see about scheduling the surgery for the > skull and the spine, but now I guess that will be postponed again. And > how does anyone pay for all of this??? So far, the bills have surpassed > a hundred thousand--and that is not even counting the last 3 weeks in > the PICU and the airlift to Portland. Insurance is paying very little. > > Liz > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... <marion%40chargesyndrome.org> or > visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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