How could this happen?

So our boys are 9 weeks old now and they were in the NICU for 9 and 14 days. The problems that they had in the NICU were some apnea problems when sleeping ad eating. We were also told they had Stridor which they would grow out of. So, fast forward to this past weekend...we get a phone call from the county health dept. checking up on the progress of the boys (apparently they do this for every NICU baby). The lady goes on the say that it says on her papers that Jack has Muscular Dystrophy???!!! Well, as you can imagine, I was dumbfounded....we had never heard this before! SO I was basically like....um, no....
She goes on to say, oh, it must be an error then. So, as you can imagine, I'm freaking out about this and very upset that if this were the case, why had we not be informed at the NICU almost TWO MONTHS ago? Anyway, so we go to the Pediatrition on saturday for our appointment and we brought this up to her and sure enough, there in the folder on the sheet to the county health dept it says Muscular Dystrophy! The DR was even suprised and she was like....NO!! That can't be, so she crossed it off.

So, of course this still bothered me so I emailed one of the NICU nurses who we became good friends with and I mentioned it to her to see if I should contact the NICU or the Neonatologist to see what the deal was because I just needed reassurance. She emails me back and said that they had seen this as well and they were so suprised by it and that they weren't sure what to do either, if they should contact us or not. SHe was pretty much just as confused as us. So she suggested that I call the NICU and talk to the Neo Case Worker to get to the bottom of it. So I'm awaiting her phone call back so I can ask a million questions.

I'm so sick over this whole thing. I will be SO relieved if this is just a total mistake but I will also be pretty upset that someone can make such a mistake like that! And if it is true and Jack does have MD I will be SO upset that this is how we find out about it!!! Right now I'm just SO upset and scared! Please pray for us that this is all just a big mistake and there is nothing wrong with Jack! This has been a hard week for us, we found out last week that my father in law has stage 4 lung cancer.....please pray for all of us!

 

:hug99:

Here's hoping the paperwork is wrong and and the very best of vibes to your father.

 

I hope that you get to ther truth soon and that it is an error.

 

i just can"t imagine that they would have made this diagnosis and not told you about it..... did your ds have any special bloodwork done? a diagnosis of md usually requires a muscle biopsy, which you definitely would have known about. you should be able to get someone (the nicu doc or your own pedi) to access his daily nicu records and clear this up. i'm sure it was a mistake.......

 

I will pray that it's a mistake and that you can have some peace while you are waiting. This sucks! When my DS was 6 we were told he likely had lukemia. We went through weeks of testing for every type of cancer you can imagine. It was terrible on all of us. When it was over and he was diagnosed with absolutely nothing, I still couldn't find any peace. Jump to 8 months later when his regular ped came back from a long break. He called me and asked me to come in. We met and he showed me that one of the nurses made two very minor mistakes when charting him which started this whole whirlwind and that there was absolutely nothing wrong with him. It was a terrible experience but such a relief to hear it was a mistake. It made me really appreciate his health.

I'm thinking if it was MD you would have had consults and extra time their to learn to deal with MD in an infant. I think it's a mistake.

So sorry about this. Please keep us posted.

 

QUOTE(fluffhead @ Jan 14 2008, 09:58 AM) [snapback]571546[/snapback]
i just can"t imagine that they would have made this diagnosis and not told you about it..... did your ds have any special bloodwork done? a diagnosis of md usually requires a muscle biopsy, which you definitely would have known about. you should be able to get someone (the nicu doc or your own pedi) to access his daily nicu records and clear this up. i'm sure it was a mistake.......

We are not aware of any special blood work that was done and certainly not a muscle biopsy so hopefully this is just a total mistake!

 

QUOTE(girls! @ Jan 14 2008, 10:01 AM) [snapback]571550[/snapback]
I will pray that it's a mistake and that you can have some peace while you are waiting. This sucks! When my DS was 6 we were told he likely had lukemia. We went through weeks of testing for every type of cancer you can imagine. It was terrible on all of us. When it was over and he was diagnosed with absolutely nothing, I still couldn't find any peace. Jump to 8 months later when his regular ped came back from a long break. He called me and asked me to come in. We met and he showed me that one of the nurses made two very minor mistakes when charting him which started this whole whirlwind and that there was absolutely nothing wrong with him. It was a terrible experience but such a relief to hear it was a mistake. It made me really appreciate his health.

I'm thinking if it was MD you would have had consults and extra time their to learn to deal with MD in an infant. I think it's a mistake.

So sorry about this. Please keep us posted.

Oh my goodness! How terrible that you had to go through all that and it was just a charting mistake(thank goodness). I'm glad it all turned out fine for you!

 

:shok: I can't believe that! I really hope that you hear from her soon so that you can get some answers. I would be so livid. Keep us posted, I will be praying for you.

 

Oh, goodness. It really sounds like an error -- surely they would have discussed it with you if he'd had an MD diagnosis....hoping you get an answer soon! I would be going nuts.

 

:hug99: Keep us posted.

 

:hug99: I'm praying for you and your family. I hope this was a mistake. Please keep us posted and let us know.

 

I hope they get to bottom of it soon for everyone involved. :hug99:

 

I am praying for you and your family. I'm so sorry to hear this. Try to remember that everything happens for a reason, even if we never figure out why. :hug99: God bless you and your family.

 

:hug99:

I am definately hoping that is a mistake, and keeping you and your family in my prayers. I am so sorry that they did this to you. :hug99:

 

Praying for you and your family.

 

Wow, that's pretty awful!! Please let us know what happens. :hug99:

 

Thats horrible, I would bet it was a typo or something (if it said MD, maybe it was near a drs signature or something???). We went to one of my son's appt and the dr looked at the chart after I was done talking about my son and she said "so except for Cystic Fibrosis, he has no other major issues"....my jaw dropped and I was like...."what...I have never been told he has cf"....turns out an intern had wrote it down as a possibliity in the wrong place and it looked like a diagnosis...scary but it does happen.

Hope it all turns out to be nothing...

 

I'm so sorry for all this! :hug99: I hope they get back to you soon and you can set your mind at peace.