Overwhelmed,scared,and depressed :( — The Bump
Special Needs

Overwhelmed,scared,and depressed :(

I had a really crappy last 2 days.  A little history: My dd has severe hydronephrosis of her right kidney/mild reflux of the left.  We found out at my 20 week ultrasound and she's been through multiple awful tests since birth.  We saw her urologist when she was 8 weeks old and he gave us 3 scary horrible options, the least horrible of which seemed to be surgery sometime between 6 months and a year to remove her right kidney because it's so badly damaged and barely functioning.  Apparently if they don't remove it, it can compress other organs and cause infection. 

 So here we are now, almost 3 months later.  I am not expecting to hear from the urologist again until after the holidays.  DD is doing really well, can't tell anythings wrong with her other than she has to take a small dose of meds every day, and so I try to push the scary parts of the future out of my mind.  Well yesterday I get a call and it's the urologist office telling me that they want me to come in next week because the dr will be out of town most of December (must be nice). They want to see her now and plan surgery for early spring. So I have to start thinking about it again, but I try to convince myself this is for the best and that we can just get it done and over with and hope to God that I do not lose my sweet baby, I am terrified of what will happen during surgery.

 So I wake up today feeling still on edge but basically accepting the whole thing.  Then I get my new medical insurance packet at work.  Turns out that unless I go with a certain hospital system, my copay is astronomical for her surgery and hospital stay after the first of the year.  We are talking thousands of dollars.  I can't go with the certain hospital system because they don't have a pediatric urologist on staff.  So we are basically screwed. 

 The urology office says that we can discuss moving her surgery up to sometime in December. (Merry First Christmas DD Sad ) Also, I am pretty sure that the anesthesia is a little more safe the older they are.  So I am terrified, feel sick to my stomach, and completely unsure of what to do.

 The kicker is this, dd arrived 5 weeks early and was only 4 lbs 12 oz.  If she had arrived on time and was bigger, there was a chance they could have done surgery immedietely and probably saved her kidney.  I feel like this is my fault even though they said I did nothing to cause her to come early.

 Thanks for listening.

Re: Overwhelmed,scared,and depressed :(

  • I know someone else who had a child with the same condition.  He just had his kidney out recently.  You were where I was several days ago.  I was questioning my son's health and could his A's and B's at birth cause his seizures, etc.  I was in therapy this morning saying to my social worker that I feel like it's my fault.  My son was 5 lbs 8 ounces at 5 weeks early.  But, his lungs weren't as mature as what they should have been and he would forget to breathe.  My worry is that he had a lack of oxygen to the brain that caused all the problems he is having now.  Are you getting help for PPD (if you have it)?
  • I'm not getting help yet, but I am looking into it, I sort of am just coming around to realize I might have some PPD.  It hasn't exactly been uneventful around here, we moved to a new house in May, DD arrived early in June, with the kidney problem, then I got sick and had to have Gallbladder surgery in August.  I feel like I can't "catch up" with my life, if that makes sense.  I feel so horrible for dd.

    I'm sorry you are going through tough times with your son, there is nothing worse than watching your child go through anything bad.

     Did your friends son do ok with his kidney surgery?

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  • Honey, I just wanted to tell you that babies bounce back from surgery soooo quickly!  I am sure your daughter will do the same!  My son has had 12 surgeries now, his longest one being an 8 hour brain surgery.  Even after all of the horrible things that happened, he is doing very well today and is as full of life as ever!  I will be praying for your daughter! 

    Oh, wanted to add that our insurance paid for our son's treatment at a different children's hospital that had different surgeons.  They HAVE to if their hospital listed doesn't have what you need.  We wanted our son to be seen by the best pediatric neurosurgeon, and since our plan didn't have one listed for us, we found one in Atlanta, several hundred miles away, got a GAP waiver on our insurance, and since then we've never had a problem.  Good luck!

  • Sorry.  : (  That is really overwhelming and scary.  You sound like a great advocate for your little girl.

    Are you sure that you copay would be huge?  I think I may have heard if they don't have a specialist (the pediatric urologist) on staff at the hospital in your network, and you have no choice to go elsewhere, they can't charge you an out of network rate.  It's certainly worth checking into.  Definitely give them a call if you have't already.

    I'll say prayers for your DD and for you.  Once you get this behind you, she'll be on the mend and you can breath easier. 

    Juliet

  • THANK YOU for your reassuring words SJC!! I am so sorry your little guy has had to go through so much!! What a strong momma you are!  He's adorable!!  I am so glad he's doing well now. 

    I am trying to fight with the insurance company, I said that same statement to them, that if they don't have what I need that I should be able to go anywhere.  There response was that I can go elsewhere, it's just out of network and I'll have a higher copay.  They have no heart.'

     Well thank you again for the reassurance, when I read those words, about babies bouncing back quickly from surgery I felt a huge weight lifted off my shoulders.  I just hate the thought of her in pain and I am terrified about taking care of her afterwards.

  • Thank you for the prayers julesandross.  I did try to call my insurance company, they are being very pig-headed and telling me that I can go out of network for care, but that I'll pay more.  It just does not make sense to me. 
  • He did just fine.  Our insurance told us that if we needed or wanted to go elsewhere and it was out of network, our ped had to show proof why and they had to pay for it as it were IN network.  That worked in our favor after our son broke his foot in an out of network area.
  • I am so sorry you have to go through all of this especially around the holidays. 

    My son, like pp, has been through many surgeries starting when he was 3 days old and has many to come.  It is absolutely amazing how strong these little ones are!  I'm sure your sweet little girl will do great!  

    I would check with your insurance and write letters and check with state coverage for special needs.  There has to be a way around this.  

    While my son was in the hospital for 6 months I mentioned to a friend that I might have PPD and she said it is probably more like PTSD.  That made a little more sense to me at the time and I think I may still have a touch.

    I really hope things start falling into place for you.  I know how difficult it is to battle insurance companies!

    Sending best wishes and positive energy your way!   

     

  • Thank You Girls so much for listening and responding, I hate that we are all in this situation, but I am glad we can be here for eachother.

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