Nazgul Girl
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Babysitting our new grandbaby 3 days a week !
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Post by Nazgul Girl on Jun 28, 2013 12:15:16 GMT -5
I wish the best for your child, family, and her medical teams.
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Deleted
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Post by Deleted on Jun 28, 2013 18:35:38 GMT -5
Sam I don't think many of us here on these boards say "don't worry about the money" very often. But obviously, this is one situation where you really mustn't worry about the money. You just do the best for Aubree, and worry about the money later.
I researched it a bit from your links. Apparently they are more successful with one form of the illness than the other (left or right). I'm not sure which form Aubree has. You are right to fight for her, you're her mom, that's what you're there for.
My heart goes out to you. I wish I were closer so I could watch your DD for you and just make things easier for you as you go through this. Happily it sounds like both you and your DH are close to your families.
You are in my thoughts Sam. Hugs to all of you.
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Jaguar
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Post by Jaguar on Jun 28, 2013 23:25:44 GMT -5
Sending prayers and healing thoughts.
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bean29
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Post by bean29 on Jun 29, 2013 0:14:08 GMT -5
Sam I am praying for the best outcome for your family. I live in the Midwest. I don't understand the relationship between Boston and CHOP, looks like a children's hospital. Is it in Boston?
Sent from my MB855 using proboards
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mmhmm
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Post by mmhmm on Jun 29, 2013 0:35:15 GMT -5
CHOP is Children's Hospital of Philadelphia, bean.
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Deleted
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Post by Deleted on Jun 29, 2013 7:54:49 GMT -5
I wish you, Aubree, and your family peace and clear thinking as you work through your options to care for Aubree.
With respect to medical issues, you do have to be your own advocate and should NEVER be embarrassed about it. Researching and finding specialty facilities is the right thing to do. Targeting the doctors you want is key & then they will be associated with specific hospitals and that is where you go. All of the major city Children's Hospitals will work to similar standards, so it is more about which facility has the docs with the specialty and experience you are looking for.
I believe that you also have a young child, so it's you, DH, and DD. In our extended family, what we have done in care situation that required travel and longer time commitment is to focus energy on the young child and determine how to keep stability for them while the medical drama and emotions are roller-coastering on everyone else. So, one parent travels with infant for a planned 1-2 month period while the other parent stays at your primary home with young child (if extended family is local, then they can be a huge help with care/transport). Then you swap which parent is with the infant at the medical facility. No matter how you do this it is disruptive for the young one who has been used to having 2 parents around, but you really can't travel with that child also when you are in hospital most of the time. You need to evaluate which jobs can sustain what time off. If yours can be more flexible, then maybe you do 1.5 month stints & DH does 0.5 month relief trips. You need to detach from 'I'm the mom, I have to be there' and think of your DH and yourself as a unit that need to figure out the logistics of care & travel.
I hope that you have counselors lined up for you, DH and DD. You will need assistance to get through this no matter how it plays out. Even in the best scenario your family is disrupted for months with travel and stressful surgeries. Don't forget to take care of yourselves as well as the infant.
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mrsdutt
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Post by mrsdutt on Jun 29, 2013 8:43:30 GMT -5
DH and I thought we would be able to use the local children's hospital to try & treat Aubree when she's born (hypoplastic left heart, complete heart block, and situs inversus). But the more we look into it the more I just don't know about that plan. Our hospital is #41 on the list. #1 is Boston - quite a ways from KC. Although, given her complex situation, we really could end up just about anywhere by the time we find someone with the experience to handle it. Saint Louis also gets great reviews and would be much closer to home. We are going to hit our insurance OOP max here in another month. The last specialist billed $2,000 just for the office visit! I am assuming that our insurance should cover the rest and we would only have to cover travel costs? We have an HDHP plan and I've never come anywhere close to hitting the max OOP so I really don't know how things work after that. We also have to take into account the toll this takes on our family & our older daughter, as well as time away from work. This is all so overwhelming I just don't know where to start. Has anyone had to make the decision to travel cross-country for medical care? Sam: I'm so sorry your family has to go through this. I know all of the obstacles you must overcome. It's difficult, but doable. Boston has great medical care. You won't be sorry if you choose a hospital there. They all work together to find cures and procedures for their patients. I would suggest you look up Dr Dec. I can't remember his first name, but if you google him, you may find a reference to NOVA. he was on the show. He took care of DH during his heart transplant and is top in his field. He is caring and skilled. There are a number of places to stay, including the McDonald house. A social worker will assist you before you arrive for placement in a residence, If you choose this location, PM me and I will fill you in with details that, hopefully, will make the transition to the area easier.
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Sam_2.0
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Post by Sam_2.0 on Jun 29, 2013 21:46:45 GMT -5
Bean - Boston Children's and CHOP (children's hosp of Philadelphia) are the two top pediatric hospitals in the nation when it comes to cardiac issues. Either one could probably handle our situation but CHOP seems to have the slight edge.
I talked with a friend tonight who used to be a NICU nurse at our children's hospital. She gave us her opinion on some things, which was nice to hear. She did say since this is so rare and the standard of care is palliative only for these children, our insurance could refuse to pay for any interventions or heart transplant as they may consider them to be experimental. That's upwards of $2 million EASY for a NICU stay and heart transplant. I know finances really shouldn't factor in to this, but something like that would throw us head-first into bankruptcy territory FAST. But it was good to know, since no one has mentioned that so far and she said they probably wouldn't.
We've really accepted the fact that unless something miraculous happens, Aubree won't be coming home with us. I don't want to not know when to give up and put her through unnecessary pain. Our friend said if it was her baby, she would choose palliative care only. She's seen the pain these babies go through when they get hooked up to the ECMO and vents, and said she could not advise us to do that in good conscience knowing that the possibility of her surviving is less than 1%.
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justme
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Post by justme on Jun 29, 2013 22:05:14 GMT -5
I hate to post a negative thought, as I truly wish you won't need this, but you mentioned earlier worrying about time off from work. My company offers bereavement pay and from what I understand this isn't an uncommon thing. I didn't know of it until a coworker lost his mother and our boss told him to take Thurs and Fri off, that the bereavement benefit was there to be used. I truly hope you guys will be worried about taking so much time off to be by Aubree's side during surgeries/recovery, but if not and you were my coworker I'd want you to take every day of the bereavement benefit available to you.
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Jaguar
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Post by Jaguar on Jun 29, 2013 22:58:31 GMT -5
Oh Sam I am so sorry.
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Post by The Walk of the Penguin Mich on Jun 30, 2013 2:38:17 GMT -5
Sam.....I am sorry I came in late to this discussion, maybe too late, but I'll tell you hat I know.
I have orthopedic issues and have had to travel for every surgery I've had. I refused to have my hips replaced by the yuckle who was the head orthopod where I worked as I heard that there were infection issues at the hospital in KY. So I had 2 surgeries at Vanderbilt, in TN and my last hip done in Seattle. While out here recovering from my hip, my gall bladder got pissed, so that got yanked too. My OOP max ($1500) was hit for in network, and I wound up paying another $3000 out of network (hospital was in, surgeon I chose after a LOT of research was out). My max OOP would have been $6000/ year.
When I got infected, TD flew to KY and helped me break out of the hospital AMA and brought me back to Seattle. The past 18 months entailed roughly 2 months in the hospital, 4 surgeries, 3 weeks in a rehab place. I'm still rehabbing, but my OOP costs were roughly $10,000 (all this fell within 2 insurance years, so 2x the deductible). I've probably paid out another $2000 this 6 months for PT...and it is not over yet. i see another $2000 easy. Total bill the insurance company paid out about $750,000.
Most insurance companies have patient advocates. I kind of knew about this when a friend of mine had COPD and was in the hospital for months. Mine contacted me when the massive bills started flooding in. They really are very helpful, not only in dealing with financial issues with regards to your insurance, but how you are doing emotionally, or if you need help.
Your best bet is to read your insurance policy book end to end. If you don't understand something, call and ask. Knowing what your policy covers is incredibly important and in those 18 months, I wound up challenging roughly $2000 in bills...and won all my appeals.
Finally, hospitals are VERY good at working out payment plans with you. But IME, you need to be proactive, and not let things slide. You get bombarded with bills (I would receive around 10 different ones each month) and I would gather them up and figure out how much to pay on each. Every bill got something paid on it.
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Sam_2.0
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Post by Sam_2.0 on Jul 1, 2013 13:06:57 GMT -5
Well, found out that heart transplants are becoming more standard and may no longer be considered experimental. Especially in cases as serious as hers. In that case our insurance would cover a transplant and we would go to St Louis. Which is nice since it's only 4 hours away by car or a quick 45 minute flight.
Really things are just all up in the air until I get closer to full term. They won't do a transplant until she reaches 36 weeks, so if she's born before that it's not good. And since everyone is surprised that she's made it this far I don't know if she can hold on another 11 weeks or if her poor little heart will give out before then. Kid doesn't seem to understand that she's already defying great odds by still being here. Just taking what comes and trying to get things planned out for any scenario as best we can.
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Deleted
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Post by Deleted on Jul 1, 2013 13:13:49 GMT -5
So many hugs to you and your family Sam. XOXO
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taz157
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Post by taz157 on Jul 1, 2013 21:12:37 GMT -5
So many hugs to you and your family Sam_2.0. XOXO XOXO
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muttleynfelix
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Post by muttleynfelix on Jul 1, 2013 21:43:58 GMT -5
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Jaguar
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Post by Jaguar on Jul 1, 2013 21:49:03 GMT -5
Little Aubree is a fighter, that's what my mom was told about me when I was born.
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happyscooter
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Post by happyscooter on Jul 2, 2013 5:59:47 GMT -5
Are you near NC? We have hospitals in Charlotte that are excellent with a Ronald McDonald house nearby, a great hospital in Wake Forest and also Duke University. Have you checked out those?
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Sam_2.0
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Post by Sam_2.0 on Jul 3, 2013 15:12:36 GMT -5
Well, we won't be travelling to CHOP. Just got their 2nd opinion and they agreed with our Dr that there's no hope for Aubree. Feels like a kick in the gut, but at the same time, makes me want to keep asking around. It's not over until it's over, right? Got the records sent out to Boston today after getting in touch with a Heterotaxy group on FB.
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mmhmm
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Post by mmhmm on Jul 3, 2013 15:46:28 GMT -5
Oh, dear, Sam. I really was hoping for better news from CHOP. Good idea, though, to have Boston docs lay an eye on the records. I'd do as you're doing and try every possible good option. CHOP and Boston are the best. If they agree with your doctor, you've got the very best opinions in the business. Then, at least, you know exactly where you stand.
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Jaguar
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Post by Jaguar on Jul 3, 2013 16:19:54 GMT -5
Oh Sam I'm so absolutely sorry. Like mmhmm I was hoping for way better news from CHOP. I do hope that Boston has better news for you, your family and Aubree. Sam I'm here if you need to vent okay hon.
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muttleynfelix
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Post by muttleynfelix on Jul 3, 2013 16:41:16 GMT -5
Lots of hugs for you.
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Deleted
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Post by Deleted on Jul 3, 2013 18:02:11 GMT -5
It's not over until it's over, right?
Sam you are ABSOLUTELY right!!!
Sam I'm SO sorry about the news from CHOP. But you are SO RIGHT to keep on, and kudos to you for getting in touch with that FB group!
I hope that you have a miracle with Aubree. Miracles DO happen.
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econstudent
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Post by econstudent on Jul 3, 2013 21:52:26 GMT -5
Hugs, Sam.
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taz157
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Post by taz157 on Jul 3, 2013 22:03:28 GMT -5
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Wisconsin Beth
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Post by Wisconsin Beth on Jul 8, 2013 11:34:47 GMT -5
sam and many, many, many prayers for Boston's opinion I don't know where Children's Hospital of Wisconsin ended up on your list, but I'll do what I can if you end up here.
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Jaguar
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Post by Jaguar on Jul 13, 2013 14:37:15 GMT -5
Sam_2.0 , is there any news back ? How are you doing ?
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Sam_2.0
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Post by Sam_2.0 on Jul 13, 2013 16:46:43 GMT -5
We actually heard back from Boston today. They don't want us to transfer care there yet, but they did say that our main cardiologist trained there and they know her well and they had already called her. At this point it is up to Aubree and how long she hangs on, but if she continues to grow and makes it to delivery then they recommend that we get an external pacemaker. If that stabilizes enough we go to St Louis for a transplant as her heart is most likely too damaged to be able to keep up for long and they can't transplant here (but he had wonderful things to say about St Louis). We go back to the cardiologist in a couple weeks so we can discuss things like delivery here or StL, taking her early or trying to wait it out, etc. It's a 4.5 hr drive to StL or a 1 hr flight. Really he didn't say anything that we've not heard before, but he wasn't as doom & gloom as the CHOP doctor that said she would be better off passing away. As for Aubree, she is hanging in there I am thankful for the frequent kicks and jabs that let me know she's still there.
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Jaguar
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Post by Jaguar on Jul 13, 2013 17:44:11 GMT -5
Aubree is a tough little fighter. That said I'm wondering why one camp said flat out no to your family, while another camp has a wait and see approach to it. Especially since in my books it's all up to what Aubree does.
Hang in there.
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mollyanna58
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Post by mollyanna58 on Jul 13, 2013 18:22:48 GMT -5
Well, that sounds hopeful. Hugs to you and your little fighter
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jelloshots4all
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Post by jelloshots4all on Aug 18, 2013 9:46:20 GMT -5
I am a new member but highly recommend Children's hospital of WI. I have personally known two families with HLHS that have had children treated there. One family had an experimental procedure done that saved his son while waiting for a heart transplant that saved their sons life. It was only the 18th time a Berlin method had been used. Good luck to you and your family. You are in my prayers!
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