Finding old medical records--Susan

[LKN]

Susan's post also reminded me of discovering old medical records and reports. We've been trying to organize Nathan's medical files. Early on, we were great about ordering records from the hospital where he was born and the first children's hospital that cared for him. We have the first 18 months of the Cincinnati records, but then we stopped. I have ordered what's missing from the file. We feel like he deserves to have his complete records in the event he wants to read what he went though or if he has questions that we can't answer some day. In my organizing, I realized that my husband never ordered the records from the hospital where he was born and trached.

I just received those records and was amazed when I read through everything. I was also able to get my hands on the post op report for his first bronch after being trached and learned that DVD had been taken. We asked for this years ago but were told pictures/images/film/DVD had not been taken. After a gazillion phone calls with the hospital, they found the DVD and have sent it.

I'm so excited to see the DVD. The first hospital's team reported in multiple records a description of the birth defect, what they saw, what they diagnosed, etc. it is different from later opinions and scopes, and I'm curious about that. I hope it will be helpful to see "action photos" of the birth defect at 14 days of life and for us to understand what was going on from 14 days to 6 1/2 months when Cincinnati got their hands on him.

My friends and family have no idea why all if this matters to me, but it does, and I know that you all "get" it--even if you think I'm nuts, too

Thanks for reading my rambling post

[Ainsley's Mom]

That didn't seem like rambling to me at all. I totally understand Kristy. It will be super interesting to see that video. And the thing is, all those reports, will make so much more sense to you now. But I have one word of caution. Reports aren't always right. Hence why you are seeing disrepancies. Having a super complex kid I can tell you it's frightening. I've never bothered to go back and correct the doctors reports. So if anyone was to ever read through the huge the stack of documents that make up her history they would be really confused. I might just take a red pen and correct everthing one day.

Things I have seen in her reports: that she has Dandy-Walker syndrome, dandy-walker variant, dandy-walker malformation (all three are somewhat different than the form of cerebellar hypoplasia that she has), I've seen she has Apert or Crouzon Syndrome (she doesn't and doesn't have any syndrome), I've seen she was trached for vocal cord paralysis (she wasn't but they thought maybe and that was the reason only until they did the first MLB but it carried over on some reports), recently her Pediatrician had documented that she has unbalanced chromosome translocation when in fact it is balanced, she said she had CP which she's never been diagnosed with even though I asked the cranio-ped and she said not really (thought the cerebellum malformation causes some similar issues that kids with CP have), and within the reports about the airway status I've seen Mom says "X" when in fact I didn't. Then the other thing that is really problematic is when something is observed in the OR, and is in the report but then it's either not much of a factor or is later shown to be inaccurate. At one point we were told Ainsley's arytenoids were very fixed and imobile, that she likely wouldn't talk, and then at the next MLB they "weren't so bad" and the ENT said he never said that about her talking (but our SLP was there and heard). And there is so much more. The list goes on...

So I think a medical history written by the parent is a good idea too. I did complete the medical resume and e-mailed it off. It was an interesting exercise. It isn't as in depth as I'd like if I were writing it for Ainsley, but is concise for the doctors. I think it would be pretty easy to take the document and flesh it out with more detail for her some day.

[LKN]

I remember my husband getting so agitated reading the nurses notes. They were full of ridiculous statements!

My favorite erroneous record is one of his genetics reports that was obviously cut and pasted from another child's record. It correctly states that all of the tests done on him are negative and that everything is normal with the chromosomes, and then you turn to the second page and it says something like: mom has multiple congenital birth defects, and it lists a bunch of tests and biopsies that were never done on him! As I told my husband, news to me

Unfortunately, despite my calling the genetics office at that former hospital, they did not correct the record, and so it is part of his permanent medical record.

We also had fun when they told us that he needed to be in isolation because of his cystic fibrosis and then proceeded to try to give him an insulin injection for his diabetes...I had to push the nurse away from him, needle in hand. He has neither cystic fibrosis or diabetes! She got really angry and called a supervisor into the room. Fortunately, my husband was there and we were both kind of calm, but it was still a little crazy!

[Ainsley's Mom]

Originally Posted by LKN

...We also had fun when they told us that he needed to be in isolation because of his cystic fibrosis and then proceeded to try to give him an insulin injection for his diabetes...I had to push the nurse away from him, needle in hand. He has neither cystic fibrosis or diabetes! She got really angry and called a supervisor into the room. Fortunately, my husband was there and we were both kind of calm, but it was still a little crazy!

Love that one! Actually that is frightening. So then you're well aware that if he one day tries to read his medical reports that he'd have a tough time sorting out what's real if you aren't around to ask. I think it's great you are going to the trouble of collecting the missing records. It'll be nice to have them.

[principe]

I get it. I'm the kind of person that needs to dissect everything to know what is really going on and hopefully find a solution. I applaud you for that. Many people just go to the doctor and take whethever prescription they were given without asking questions. I always beed to know the diagnosis, the medication given and why it was given. Then when I get the meds from the pharmacy I check they were given to me correctly. I ask everything and look at every record. It matters.

When Aldo was borned and the doctors heard stridor they kept going into our room to check on him. I was in the hospital for 3 days because of my csection and the baby stays with mom in the same room. Finally, the regular pediatrician there called for ENT, and I was told he had a small web but this ENT team was not pediatrics. They don't have pediatric ENT where he was borned. He was referred to CMH and first ENT appointment there his ENT found a big web. Next day during surgery he found the subglottic stenosis. Days later the genetics team tested for DeGeorge Syndrome because the majority of kids with a web have this syndrome. Aldo was negative. The hospital also heard a heart murmur and realized Aldo had high blood pressure. They checked his heart, kidneys, and kidneys were fine but heart still had a PFO which is now closed. Luckily, I can tell you that CMH has been very throughout in Aldo's medical care and conservative in giving him medications. I'm glad I didn't go through the trouble you went through when you talked about that diabetic shot incident. But I know it happens and hospital staff makes mistakes. I'm glad you fought that nurse.

[suzanne2545]

Oh my. Your stories are funny (or not!). For me, having all the records is about being worried about Parker's kids having issues as well. I daily thank my lucky stars that I assume he will have kids (if a woman will take he and his naughty ways).

But because we've seen and heard about the genetic predisposition to vocal cord issues I guess I will be happy when my grand babies are born and living life trach free.

So, I like the files to reference things when I periodically get the hankering to research and see what the latest info is. I tend to forget some of the terms.

Totally understand your desire to have the notes . . . no matter what your main reason is.