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Old 08-31-2013, 03:22 PM   #1
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New Update Post #54~~Any Nurses or Dr's?? Please help!

Hello. I know I haven't posted much lately, but I could really use some mommy help. My 13 yr old has been having some medical issues for the last almost 6 months. I could use any advice and/or validation that I'm handling this the right way. I feel like the dr's won't listen to me, and I know I am not a dr, but I'm a mama and I know what's normal and not normal for my dd. I'll try to keep this short and to the point, so I'm going to do it in date form. Sorry in advance for how long it will end up being.

February: My, at the time, 12 yr old dd told me her belly button was feeling wet and was kind of stinky (sorry, gross I know). As a mom, who didn't want to rush to the dr, I told her to wash it better. It still continued.

March: Went to pediatrician because I noticed greenish drainage. Dr. said to keep an eye on it and use mild soap.

End of March: Returned to dr. Wasn't better and dd felt a bb type bump under belly button. Again, dr. said keep an eye on it, but started antibiotic in case it was infected.

April: Went back to dr. Not better. Dr. finally decided to culture drainage. Positive for staph (not MRSA). Dr. switched her antibiotic to new one because it was resistant to the other. Also ordered an ultrasound to look for possible absess (since she felt bb) but ultrasound showed nothing.

May: Returned to dr because while the antibiotic slowed it down, it did not stop drainage. Dr said give 2 more weeks.

End May: Went back to dr. because still draining. She said she didn't know how to proceed so referred us to pediatric surgical specialist.

June: Went to see surgeon. He recommended exploratory surgery and scheduled for a few days later. At that surgery he said he found a very small hole in the fascia (muscle layer is my understanding as to what that is), so he stiched up and said that should do it.

Mid June: Returned to surgeon because a week post op, she woke to her belly button draining down her stomach. I told him something must've happened because she was fine and it was like the flood gates just opened . He said to give it more time to heal, that it may have just been drainage that formed a pocket and broke open.

End of June: Returned to surgeon because it was still draining. He again said healing can take up to 6 weeks, just to give it more time and keep packing her belly button with gauze.

July: Returned to surgeon again, still not better. Again told that it looks ok, didn't think it was infected, told us give it more time. This was 5 weeks post op.

Mid July: Went to MN to visit my mom. 2 days before we were leaving, dd told me she knew where it was draining from and showed me her belly button. The incision was visibly open and tissue protruding out from it (at 6 weeks post op). I called the on call surgeon who said that I could go to the local ER to check it but that they doubt that it was really open. Went to the ER the next day. Dr. said definitely open and that it was fat coming through. Prescribed and antibiotic to prevent infection and sent us on our way because he knew we were heading home the next day and he didn't feel it was an emergency situation. He recommended her surgeon do a cat scan to look for a tract because he said she won't heal if there is one. That was a Saturday. We came back to IL Sunday. I called the surgeons office Monday and had her there Tues. Our surgeon was on vacation so a different one looked at it and said it was omentum coming through which told him the muscle layer opened back up. I told him the dr in MN suggested a catscan to look for a tract. He stated that any foreign ER will recommend a catscan but they rarely do one because of the exposure to radiation. He said he had been doing this for 35 yrs and knew exactly the problem. Scheduled surgery for that week. He said surgery was succesful but he had to cut the muscle layer more to get the omentum back in place because the "defect" was actually quite small. Prescribed another 2 weeks of the antibiotic that she had already been on for a week.

End of July: Went to 2 week post op. Everything looked good and continued to look good. I was satisfied.

1 week ago: DD was at her dads and called me and told me her belly button started draining again I took her to ER the next day to culture it again. This time it was positive for Group B Strep. Her ped was supposed to call in medicine and "forgot" but since we were going to the surgeon for a follow up they suggested he prescribe it.

2 days ago/ 5 wks post op: I took to her to the surgeon and demanded imaging because there has to be a reason that she is not healing. He prescribed a medicine that she has been on 3 out of the last 6 weeks, that Group B Strep is commonly resistant to, but he feels it may work. He packed it with gauze again. He sent us for an ultrasound, even though I wanted a catscan to also make sure the muscle layer was still closed, because he felt it was just as good. Ultrasound tech said she saw an obvious tract and that she could see infection sitting in there by the different colors bouncing off of it. She said a tract is not normal and shouldn't be there. Then I remembered what the MN dr had said and she said yes, he is correct, they usually need to be removed. Called the surgeon and he doesn't want to do anything with it and believes it may heal on it's own from the inside out. It didn't the last time or through all the 5 months of antibiotics but it may this time. The ultrasound tech said that a tract is a perfect place for moisture and bacteria to sit and with that there, it will always drain from her belly button.....same thing MN doctor said, but the surgeon wants to wait and see! I called Children's Hospital in Chicago. We go this Wed. for a second opinion. I'm simply not ok with the wait and see game any more. When I talked to his nurse to have her records faxed to the new dr, she told me that she agreed with that decision 100%!! That came from his own nurse!

Am I over-reacting? Is this surgeon just wanting to wait because if he admits this is a problem then he is admitting they screwed up? Any other ideas as to why she will not heal and continues to have drainage and infection after infection? I feel like I'm losing my mind because i'm at the mercy of what these dr's are willing to do. Of course I am not gung ho about a 3rd surgery but I need her to have a normal belly button. She is about to start cheerleading. She want's to take dance. I want her to do volleyball and basketball. What is she supposed to tell everyone when she is changing and has her belly button stuffed with gauze and covered with tape? She is 13 and very self concious of this. If no body has any ideas, Id like to thank you for reading this very, very long story and letting me vent and get it off my chest. Thanks

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Old 08-31-2013, 03:36 PM   #2
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Re: Any Nurses or Dr's?? Please help!

Not a Dr or nurse - but I think it's a VERY good idea that you are taking her to a Children's hospital for a second opinion. I am honestly AMAZED you were patient enough to not have done that MUCH sooner.
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Old 08-31-2013, 03:42 PM   #3
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Re: Any Nurses or Dr's?? Please help!

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Originally Posted by mom1mg View Post
Not a Dr or nurse - but I think it's a VERY good idea that you are taking her to a Children's hospital for a second opinion. I am honestly AMAZED you were patient enough to not have done that MUCH sooner.
Thank you I feel like I am doing the right thing, but then there is this little thought in the back of my head like "Am I over-reacting"? Should I just trust this dr? After all, he is a pediatric surgical specialist.....he SHOULD know what he is doing. But truth is, I no longer do and my dd has said she doesn't want to go back there either. That they don't know what they are doing. It just means missing work and traveling to go to Chicago, but I hope we finally get some answers!

ETA: This was at a children's hospital too, just a different city. However, I work with some ladies whose kids have medical issues and have been to this same hospital and said that they were extremely disappointed and transfered thier kids to Chicago as well.
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Old 08-31-2013, 03:45 PM   #4
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yes, get a second opinion. I have seen the same thing as the out of town ER.. that the wound won't stay closed with a tunneled infection. they may have to open it all the way up to clean it out. they might not close it right away. sorry this is happening. I wonder what caused the infection in the first place
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Old 08-31-2013, 03:51 PM   #5
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Re: Any Nurses or Dr's?? Please help!

I am so glad you are taking her somewhere else. That is complete crap! Trust me if that was him or his child this would have been resolved months ago. Please keep us updated.
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Old 08-31-2013, 03:52 PM   #6
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Re: Any Nurses or Dr's?? Please help!

Definitely agree with taking her to a Children's hospital for a second opinion. I hope they are proactive and everything gets taken care of quickly!
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Old 08-31-2013, 03:58 PM   #7
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Quote:
Originally Posted by mamabby
yes, get a second opinion. I have seen the same thing as the out of town ER.. that the wound won't stay closed with a tunneled infection. they may have to open it all the way up to clean it out. they might not close it right away. sorry this is happening. I wonder what caused the infection in the first place
Are you a nurse? I had to get the ultrasound images and report to take to Chicago. I know what the tech told me while doing it, but the report is written by the dr. Would you know what it means if I post it? I don't understand dr talk. Lol
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Old 08-31-2013, 03:58 PM   #8
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Re: Any Nurses or Dr's?? Please help!

DH and I have been dealing with VA docs for 5 years. We've went through like 6 doctors, and that's just for primary care! Not to mention specialists. They didn't know what the hell they were doing and instead of saying "I don't know" they decided to say "There is nothing wrong".

So my advice is good for you for getting a second opinion, and ditch any doctor that is not willing to listen to you and work to get to the bottom of the issue. There are a lot of doctors and its just weeding to find the one that is actually good.
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Old 08-31-2013, 04:14 PM   #9
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Re: Any Nurses or Dr's?? Please help!

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Originally Posted by mom1mg View Post
Not a Dr or nurse - but I think it's a VERY good idea that you are taking her to a Children's hospital for a second opinion.
Poor girl! She (& you) sounds like a trouper to get through this all - well done. Sounds like a better fix is required, especially considering how long she's been on antibiotics. I hope this is the last & completely successful surgery for her bellybutton!!
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Old 08-31-2013, 04:51 PM   #10
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Re: Any Nurses or Dr's?? Please help!

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Originally Posted by Liliya's Mommy View Post
DH and I have been dealing with VA docs for 5 years. We've went through like 6 doctors, and that's just for primary care! Not to mention specialists. They didn't know what the hell they were doing and instead of saying "I don't know" they decided to say "There is nothing wrong".

So my advice is good for you for getting a second opinion, and ditch any doctor that is not willing to listen to you and work to get to the bottom of the issue. There are a lot of doctors and its just weeding to find the one that is actually good.
My mom is a nurse at a VA near you, she says the same things
Eta: she says they don't know what they're doing.
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