United Brachial Plexus Network, Inc.

TODAY WE TOOK OUR SON TO THE HOSPITAL & HE HAD TO GIVE HIS BLOOD FOR A TEST. THE NURSE WAS INFORMENED ABOUT HIS ARM BUT, STILL LOOKED FOR A VEIN IN THAT ARM. I TOLD HER NOT TEST IN THE INJURED ARM. I WAS WONDERING IS THERE ANY WEBSITE OR LITITURE ON BLOOD IN THE INJURED ARM? ALSO, WE GOT AN X-RAY. THEY STRAPED HIM TO THIS BOARD; WITH HIS ARMS ABOVE HIS HEAD. CAN THIS HURT? HE WAS SCREAMING. I WAS CRYING FOR HIM. SHOULD THESE NURSES BE MORE EDUCATED ABOUT THIS? CAN THEY HAVE BLOOD TAKEN FROM THEIR INJURED ARMS. PERSONALLY ,THEY WILL NEVER TAKE BLOOD FROM HIS ARM IF I AM THERE. BUT, WHAT IF HE WAS AT SCHOOL, WOULD THEY KNOW IN CASE OF AN EMERGENCY? WOULD THE PEOPLE TAKING CARE OF MY SON KNOW WHAT THE HE... TH DO? OR AM I OVER REACTING BECAUSE I WAS KIND OF UPSET TODAY?

We were told that blood, blood pressure, or temp should never be taken from JAvier's injured arm (r). It is because the circulation is slower, meaning lower blood pressure and temps. This could lead to slower healing and possibly infection. You could get your son a medic alert bracelet. As far as the x-ray, I don't know. It would bother javier only because his passive range lets his arm go overhead. I don't know how he would do being strapped like that though. If I were you, I would call your childs BPI doc to ask. Best of luck. And no you weren't over reacting. I too have had to yell at doc ans nurses in emergancy situations about Javier's injured arm.

Marlyn mom to Javier 1 1/2 ROBPI

In the Awareness section of the UBPN site you will find an emergency medical card that you will be able to hand to anyone to explain the things that can't be done and you can keep it in your child's file at school and with the nurse and also on his car seat, and in your wallet. You can also give it to the babysitter, your parents, etc. It comes in handy!

here's the link to it:
http://ubpn.org/awareness/A2002emergency.pdf

As the patients mother, you have every right to refuse ANYTHING that you are not comfortable with. Sarah is anemic and they USED to insist on using her right finger until I kept saying no!! It is YOUR choice..don't let them!

~Mandie

I am 66 robpi and have NEVER had a needle in my right arm. As a small child my family doctor said that I must never allow anyone to take blood or give me an injection. He also told me not BP on the right side.

I asked a bpi specialist if I should be wearing a medic alert and he said YES...
It should note no IV sticks or BP on bpi sided and careful positioning of unaffected arm.
If a child has Horner's it should also be noted because of the possibility of presenting in an emergency room and being misdiagnosed as having pressure on the brain.
That is due to the slow in dilation in the affected eye.

As a parent never be polite enough to allow them to do anything that makes YOU uncomfortable.
Just because someone is in the medical field does not mean that they are experts when it comes to bpi care and treatment.
Most medical personnel do not know the limitations of the bpi arm and are very uninformed.
It is almost impossible sometimes to get them to listen to me as an adult.
The last time I was in the hospital many nurses assumed I had one of my breasts removed because I had some sort of code tag on the right arm.
It was a shock to them that I had "only" a birth arm injury" and they had plenty of questions.
I was asleep and even with the tag someone tried to twist my right arm to take blood.
I will admit I was upset and angry.
It was their job to be more careful.
Suppose I was not aware!
I think I embarrassed my daughter( who is a nurse in that hospital) because I was so insistent about not having blood taken from that arm.
She knows better now and understands more.
I did not talk about my arm much until I found UBPN.

Kath (adult/robpi)

Last year I had to take Juliana to the hospital. The triage nurse wanted to do bp on Juliana's left arm. I told her not to and explained that she has a lbpi. I was told by her that it shouldn't matter. I told her that it matters to me and her doctors, so she will not do bp on that arm. Well, I just want to see the difference she told me.. No, I said, she is not your toy, do the bp and the pulse ox on her right side only. It was so annoying. And I hated to piss off the triage nurse in the ER as she determines who goes in when if you are not dying... I guess she decided I knew something when I rattled off the surgeries and muscles they moved...

And, yes, it could have been painful for your son to be in a particular position. Juliana took her basketball picture and the photographer tried to put her arm in a particular position for the picture and she dropped it. He told her again, and she said that it hurt to keep it there. And I looked at him and said that she just couldn't do it. So yes, it can hurt.

Keep fighting for your child, we are the only ones who will.

claudia

I agree with the others. The problem with these doctors is they don't know. I ahve printed out the cards that Francine is talking about and have put one on the back of him insurance card. Every doctor I go to gets one for him file. The health department where I tak ehim for shots gave me the hardest time but once I got it through their thick skulls they put a note in RED SHARPIE on the front of his file. We have to be strong for our kids......the infection risk is too great. Also, before we see a new doctor, I print out so much information for his file for them that they have no choice but to read it. I have personally walked out or Doctors' office because they looked at me stupid when I mentioned Brachial Plexus Injuries. My son has a doctor now that admitted he knew nothing, but surely did learn quick when I told him how I felt. He know see's two OBPI patients and becoming a "EXPERT"
GAYLE mom of Brandon 7 ROBPI

In addition to the possible circulation issues, etc, that could be different in the injured arm, there is something else that came up during Joshua's 5-day hospitilization for pneumonia recently.

I was VERY GLAD I made them put the IV in his uninjured arm!! He wore that IV for five days, it was in the crook of the elbow so he had to get his arm taped to a board, and he got various injections into the IV. During all of these procedures, the nurses though *nothing* of pulling his arm around in awkward positions, twisting and torquing it. This was OK for his uninjured arm but could have been bad for his injured arm. The nurses can really "manhandle" the kid's arm - hand all the way up to shoulder - during some of these procedures, which is no big deal as long as the arm bends and twists the way they expect it to. But if there is any limitation in range or stiffness anywhere in the arm, I think a nurse could easily cause injury or pain.

Kate

I would like to add also, that WE TALKED ABOUT MEDICAL ALERT BRACELETS ON HERE A WHILE AGO AND a few things were brought up that I would like to share......I didn't get my son a medical alert braclet because someone bought up a valid point. In case of EMERGENCY, I would rather them stick a needle in my son's affected arm then let him die. What if they couldn't get a needle in the left arm and had to use the right(AFFECTED) arm. GOD BLESS THEM !!! If my son was alert he wouldn't let them stick him in the right arm anyway, he has heard me argue this issue and knows why mommy argues this issue. I just think it is something to think about. The possibility of something happening at school where they were unable to get a hold of a parent is pretty low. I volunteer in the school and have never ever seen a paramedic take a child away in an ambulance. They would try their hardest, they do not want the responsibilty. I would fear more for those children that have allergies to medicines! I thought too that my son needed a bracelet, but after that point was brought up I chose not to go that route. I do keep a laminated copy of that medical alert card attached to his BACK PACK at all times.

I think if they could not get an IV in the unaffected arm they could use the legs. I was always afraid that they would stick my arm. Sometimes when someone just taps my arm I get a message to my brain that I am in pain. So I never want anyone to strap my arm to a board or to stick a needle in it. The thought makes me sick to my stomach.

Kate as far as the way the handled Joshua arm during his hospital stay... They should be super careful with the unaffected arm because that is all most of us have to depend on for our entire life. It does begin to wear out over time from over use and strain. I also have so much scar tissue from blood tests that it is so hard to find a vein in my unaffected arm. I tell them ONE blood test a year and that is it. Get is all then! I refused to stay in the hospital once because I knew they would be taking blood all night long. The doctor made a deal with me... if I stayed for observation he would not allow all the blood testing. Only once a day... I stayed.

Kath (robpi/adult)