Thursday, October 1, 2009

I need advice in regards to Kaitlyn's upcoming heart surgery

Yesterday Kaitlyn met up again with Dr. Malcolm. He is her cardiologist over in Grand Rapids. He is a sweet, honest man. Her appt. went well! She weighed in at 10lbs 12oz. I can't believe it. She's up 12 oz in 12 days. They are amazed, thrilled. Apparently for a "heart" baby that's great. She hasn't had any symptoms of heart failure yet. I had noticed a little sweating, but that could just be because she gets hot?! Either way, the doctor decided to start her on medication (Lasix, and Digoxin). He said symptoms tend to start at 8-10 weeks of age and she was 8 weeks on Tuesday. He wants to see her back in 4 weeks. He thinks as of now surgery will be the first of the year. Hopefully if all goes well we can make it through the holidays before surgery. Where will the surgery be? We don't know yet? That's where I need some help and advice!

As many of you know we live in Michigan. We also have Priority Health insurance as well as Children's Special Health Care for Kaitlyn. There are 3 hospitals in Michigan that can perform her surgery (AVSD), Devos Children's Hospital in Grand Rapids, DMC Children's Hospital of Detroit, and MOTTS Children's Hospital at the University of Michigan. We clearly want the best for Kaitlyn which would put us at MOTTS. They do 3 times the volume of DMC and 9 times the volume of Devos in a year. We have been advised by every medical professional that we should go to MOTTS. So what's the problem right?! Our insurance denied it, they are "Out of Network." Unbelievable. Here's where I need help...

We are battling with PH, the cardiologist is helping but as of now PH isn't budging. I need to find someone else who was in our shoes. We've heard there are families out there who were approved put due to privacy laws they can't tell us who they were. PH can't do that, allow one family over another, that's discrimination. If this was your situation, or if you have any advice in regards to insurance companies I would love to hear from you. Or if your child had heart surgery at any of these hospitals I would love to hear your experiences. The kicker in all this is that if Kaitlyn just had straight medicaid without PH being our primary insurance we could go there no problem. The system is so messed up! I would love to hear from you! Thanks in advance!


  1. im sorry i don't have any advice on that:( but im am so happy to hear she is doing well:) hope you soon find the answers you need.

  2. Hope this helps

    Your insurance "should" approve surgery, consults, etc at MOTTS if you are REFERRED there by your doc. In the referral, he has to make it clear that the other hospital is not equiped, or that he has run out of things to try, etc. to handle the case. This is how we ended up in Wisconsin.

    I have another way, but it would be better if you e-mailed me. ;)

    Steph and Christopher

  3. I don't have any advice, but one of my blogging/FB friends has a little boy who had heart surgery in MI. Here's a link to her blog. I will also message her on FB to come to your blog to give you some advice.

    Kaitlyn is a beauty! I'm so happy that she's doing well. Lily was on digoxin and lasix from birth. I thought it was scary to administer at first, but it became part of the routine very quickly.

  4. I'm going to go to Gavins blog right now and tell his mommy to come talk to you. She also lives in Michigan and I know Gavins been to a couple of those hospitals. I'll send her over.

  5. We live in Michigan. We have PPOM & Childrens Special Health. We had no problem, but UofM is in our network. You need to get a social worker involved. File an appeal with PH. Many times over if necessary. The cardiologists HAVE to be involved. They really need to push the insurance company into this. Our docs at UofM are fantastic when it comes to going up against insurance companies. I don't understand why this this has to be so hard to get approved. If your cardio doc gives a referral to Motts. The insurance company should accept it. Unbelievable.

    I do know of a family who did go to DCH with their son for 7 surgeries when he was a small child (he's 22 now). They loved it. Of course, that was many years ago.

    Best of luck. Be sure and keep us posted.

  6. Hi, I am a high school friend of Julie's..she sent me this link b/c my son is crrently at MOTTS recovering from heart surgery. We had no idea before he was born that he had a heart defect (interrupted aortic arch and small VSD). He was taken by helicopter to MOTTS because DeVos only does up to level 2 heart surgeries, Ethan needed a level 7. I will tell you without a doubt that MOTTs is awesome, it's the best place to be, they are beyond thorough. Ethan had a huge complication of drainage after his surgery, pouring 800ccs of fluid into his chest tubes per 8 hour shift. This required another surgery and now our huge hurdle is getting him off the vent. The Dr.s here are completely amazing, I am in awe everyday. I would not want Ethan anywhere else right now. We also have Children's special health care and my husband has his insurance from his work (MedBen). They have not denied any service thus far, but anything that is not covered by them CSHC is picking up. We also do not qualify for straight Medicaid - I don't know why priority health would say no if it's a medical need, just b/c it may cost more...b/c CSHC would make the difference...I hate the system too though, he gets a little SS right now, but once he's home he won't get any. If I were you and you can do some more fighting- get her here at UofM. Hope this helps, feel free to email me at anytime if you have anymore questions. I'm thinking the reason we were fine with insurance is b/c Ethan couldn't have his surgery at DeVos.
    Hang in there!!

  7. I just read some of the other comments on here and yes I do think that a referral is what you need, and a reason as to why you would need to be at MOTTS versus some other hospital. We had a meeting last week with our rep from CSHC and she said that any type of surgery, treatment, etc is automatically covered by them if it has anything to do with the diagnosis. See what they say as far as if your Primary Insurance (PH) will not cover. Maybe CSHC will pick it all up?? We have a social worker here at UofM, talk to Sarah at DeVos..she was wonderful!! Or another S.W. I sure hope all of this works out for you, our children deserve the best and I do feel that UofM is.

  8. Hi Jenee- I don't have any specific advice but I will put up a link to your post on my blog tomorrow to help get the word out!