Mothering Forum banner

1 - 20 of 25 Posts

·
Registered
Joined
·
12,040 Posts
Discussion Starter · #1 ·
My Midwife ordered the medical records for us (at my request) and I read the ER records already, the CVICU stay and surgery records are on their way to me in the mail. I'm torn on whether or not to read them but I feel like I NEED to know everything that happened. If DS could live it, I feel like the least I could do is to read it. I feel like I need to know everything but I'm scared of what is in those records. My mom swears she heard one of the nurses say DS had a close call but no one ever mentioned it to us. I also did not know DS had metal rings holding his chest bones together until a recent X-ray.<br><br>
Could you read the records from your child's ICU stay? Should I? I've gone from having nightmares of the stay to having dreams of things that actually happened and I'm less scared in the dreams - I think I am feeling better about things. I'm not sure if this will set me back or bring back the nightmares or what. Any advice?
 

·
Registered
Joined
·
2,062 Posts
I read my dd's medical records every day she was in the NICU. At least every day she was at the children's hospital. Parents were not "allowed" to look at the charts and records at her other hospital. Had she stayed there longer I would have fought that. I had a great need to know every little detail, it made me somehow feel more like her mother at the time.<br><br>
I would definately read dd's medical records now. In fact, you've inspired me to put that item down on my "to do" list <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up"><br><br>
Was it costly to get the copies?<br><br>
I do understand your hesitation, though. I think right now, I'd like to know I could read the records but I might very well sit on them for a time until I felt ready. It is heartbreaking to think of all that our kids went through when they were so very small. But it may be empowering (for lack of a better word right now) to see how strong they were & are and how strong their spirit is to be able to overcome so much.
 

·
Registered
Joined
·
1,900 Posts
I keep wanting to get my records from the girls' birth and their early days in the NICU. I don't need to read 9 weeks of medical records x 2, but I would like more detail on the first week or so, when I was in such shock, so confused, and still on a lot of pain meds. And I'd like more clarity around their birth and my 2-week stay on the high-risk unit. Someday I'll get myself together and order copies. It's something like 50 cents a page, though, so I'm a little scared of the cost!
 

·
Registered
Joined
·
1,808 Posts
I read her records religiously while we were in the hospital.<br><br>
Someday I want to order a copy of her records but we were there for 16 weeks so I doubt we'll ever be able to afford it <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment">
 

·
Registered
Joined
·
279 Posts
I intend to read Erin's records, but not yet. It's way too soon. I'm thinking maybe in a couple of years, but not now.
 

·
Registered
Joined
·
12,040 Posts
Discussion Starter · #6 ·
We didn't have to pay for tham because our Midwife ordered them for us (she gets them for free) and is giving us a copy. She's really not supposed to but we are fairly friendly and she's doing it as a favor to me. Some hospitals charge as much as $3 PER PAGE! That would be a small fortune. DS was only there for 10 days but the records are huge. Our hospital also requires that if parents want to request records they have to first sit down with the legal team from the hosp to go over the records and interpret them. I guess it is to avoid lawsuits.<br><br>
So if you know of a care provider who will make you a copy (pedi, etc) then you can get them for free. I have an intense "need to know" feeling about the records because I feel like there is a lot that was not told to us, especially before the surgery. There were several hours that we were not allowed in the room while they were getting him "settled in" and I think he may have almost died during that time. I want to know about it and know exactly what was done to him.
 

·
Registered
Joined
·
1,178 Posts
I read absolutely everything that was put in my daughter's chart during the 225 days she was in the hospital. Radiological reports, nurses daily notes, summaries from the doctor, lab results, everything. It was tough at times but the nurses were really good about having a doctor talk with me before I read something (ie a doctor came over and told me in person that the pulmonologist recommended a tracheostomy and long term ventilation in his note instead of me learning about it the first time when I read the note).
 

·
Premium Member
Joined
·
8,322 Posts
I read her daily reports daily and even her medical stuff. I could not inturpret it all like dh could (in healthcare) so he would read them and tell me. Also, he would "slip in" to medical jargin jive with the Drs and nurses and its like another language. He does it with the ped all the time. They both claim they dont know they are doing it and its a lot of times over my head but he tells me after the fact.<br><br>
The reason they dont give those out with the lollipops is the records could in fact be Doctored up or falsified or changed after they are out of the Office or hospital's hands. Kind of like transcripts from college etc. My ped has a synaposis of what happend and she was in touch w the nicu daily so I know she knows all that happend.
 

·
Registered
Joined
·
630 Posts
I read my daughter's daily reports/medical records every day of her 2 weeks in the NICU. By the end her folder was about an inch and a half thick full of test results, orders, echocardiogram stuff and the routine nurse's notes.<br><br>
I have a copy of her discharge summary and I read it from time to time. I didn't request a full copy of her medical records from her NICU stay - for one, I read it all back then, two, I have no need for it... that'd be a heck of a lot of paper. I did request, and received, the paperwork surrounding her delivery.
 

·
Registered
Joined
·
4,541 Posts
I read both guy's charts every single day (it got to be a running joke with the nurses, they'd leave it for me on the rocking hair next to the isolettes) And I got copies of their charts and all other lab results, etc before they were discharged.
 

·
Registered
Joined
·
3,109 Posts

I read my dd's medical records every day she was in the NICU. At least every day she was at the children's hospital. Parents were not "allowed" to look at the charts and records at her other hospital. Had she stayed there longer I would have fought that. I had a great need to know every little detail, it made me somehow feel more like her mother at the time.<br><br>
Heehee, our NICU had the parents can't read rule and I flagrantly broke it everyday. They left it on a shelf right beside me. It was good I did so because at first the nasty nurses were leaving horrible stuff about me in it (including lies about me endangering the baby), but once they realized what I was doing and I challenged one entry in particular with the neos, they stopped putting that stuff down.
 

·
Registered
Joined
·
12,040 Posts
Discussion Starter · #12 ·
The records just arrived, I'm gonna wait until after DS1 goes to bed to read them, I did glance at them and see that Evan's sats went as low as 35 at one point <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/yikes.gif" style="border:0px solid;" title="EEK!"> I never knew that. I'm anxious to read them but scared too.<br><br>
I didn't even realize we could read the records while in the hospital - I wish I had read them.
 

·
Registered
Joined
·
882 Posts
I have all of my daughter's nicu records, every.single.page including nurses notes hand written on scratch paper. I also have her records from another hospital stay/surgery. I have read every.single.page as well. It was enlightetning. We found out ALOT of things we didn't know at the time. Incuding that she coded on 3 different occasions which we were NEVER told. There is more. Overall we were impressed with her care, but we were peeved we weren't told everything. I know i couldn't sleep for a few weeks aftert, but I aklso have a bit of a medical background and felt like i NEEDED to know everything. My daughter's records are in HUGE manilka envelopes and i believe there are 9 of them.<br><br>
Here's a picture of some of them. I have about twice this and even more to order. ugggh: <a href="http://photos1.blogger.com/blogger/5429/1711/320/newpics%20008.jpg" target="_blank">http://photos1.blogger.com/blogger/5...pics%20008.jpg</a>
 

·
Registered
Joined
·
12,040 Posts
Discussion Starter · #14 ·
I read them and they weren't that bad. I did learn a few new things like there was a significant hole in his vent tube that compromised his oxygen for a while. He had an infradiaphragmatic return repaired as well as his PDA and TAPVR. I also learned that the surgeon had to cancel another surgery in order to operate on my son, he was called in at 4 am for the surgery. DS was dangerously close to death at the time of surgery and was not expected to live, we weren't really told this. The surgical report explained the surgery in great detail and it was hard to read. I had a mini panic attack reading it and had to stop for a minute. It was hard picturing my tiny baby being cut open like that. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
All in all I am really glad I read the report because it said how well he did during and after surgery and it made me feel good about his future health. The report did not include the nurse's notes and I wish I could read them. Is there a way to request them?
 

·
Registered
Joined
·
201 Posts
Oh, yes, I read them. You bet. When they told us that DS would be going home in the next 1-2 days, I asked the medical staff for an opportunity to sit down with the three-ring binder that was my son's medical record chart . The nurses willingly obliged. When I was finished reading over them (after an hour or so), I asked for a meeting with the head neonatologist so that I could ask questions. He came down to the NICU so that I didn't have to leave my baby. So long as I live, I will never forget sitting there with the doc -- him sitting in one of the rocking chairs and kindly and patiently answering all of my questions, as if sitting there with me was the most important thing he had to do right then.<br><br>
Now DS has just turned five and even though he has had no long term effects to speak of, I have decided it would be prudent to have a copy of his records (and mine!) from his birth and his NICU stay. Thanks for this thread to remind me to request those records!
 

·
Registered
Joined
·
1,254 Posts
I could have read them in the NICU, but I didn't. They gave us a copy to take home and I read it a couple of months later. I found out that she had a brain bleed that they didn't tell me about. It was only mild, but still they should have told me instead of saying everything was fine.
 

·
Registered
Joined
·
745 Posts
I didn't know I could get copies. I might look into that. I didn't know I could read them until my sister told me after he was home, otherwise I would have read them every day. We didn't have a good experience with one of the drs, so I just want to know what he did. How do you get copies? Do I just need to call the hospital?
 

·
Registered
Joined
·
593 Posts
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>meesa143</strong> <a href="/community/forum/post/9053054"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I didn't know I could get copies. I might look into that. I didn't know I could read them until my sister told me after he was home, otherwise I would have read them every day. We didn't have a good experience with one of the drs, so I just want to know what he did. How do you get copies? Do I just need to call the hospital?</div>
</td>
</tr></table></div>
meesa- What hospital were you in? All three of my boys were in Ogden Regional's nicu. With my firstborn we had a horrible neonatal doctor and to this day, 4 years later, I can still remember every conversation we had with him and the rude things he said. I still carry a dislike for that man.
 

·
Registered
Joined
·
12,040 Posts
Discussion Starter · #19 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>meesa143</strong> <a href="/community/forum/post/9053054"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I didn't know I could get copies. I might look into that. I didn't know I could read them until my sister told me after he was home, otherwise I would have read them every day. We didn't have a good experience with one of the drs, so I just want to know what he did. How do you get copies? Do I just need to call the hospital?</div>
</td>
</tr></table></div>
Most hospitals have a records dept and you can request a copy of records via fax, phone, or mail.
 

·
Registered
Joined
·
745 Posts
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>nathansmom</strong> <a href="/community/forum/post/9053451"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">meesa- What hospital were you in? All three of my boys were in Ogden Regional's nicu. With my firstborn we had a horrible neonatal doctor and to this day, 4 years later, I can still remember every conversation we had with him and the rude things he said. I still carry a dislike for that man.</div>
</td>
</tr></table></div>
He was in Davis, but the drs go back and forth between Davis and Ogden Regional. I bet it was the same guy, I just drew a blank and can't remember his name <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/duh.gif" style="border:0px solid;" title="duh">
 
1 - 20 of 25 Posts
Top