Traci--Veggiebug having your baby soon?

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Traci--Veggiebug having your baby soon?

Post by marieke »

It really depends on the extent of your injury. Not everyone feels pain when the BP is taken or has an IV inserted.
You may not be able to have both on the same arm. The BP cuff tightning can mess up an IV insertion and you'd have to be re-stuck in a different place. That is why they told you that one would ahve to be done on your BPI arm. Try the BP first, if it doesn't bother you, then do that.
Make sure they understand though hat you have a BPI and try to explain what the differences are (sensation/pain.. whatever you may have).
marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Traci--Veggiebug having your baby soon?

Post by Kath »

Traci
I have been told ever since I was a child that I was NEVER to have bp taken or injection in my bpi arm.
My family doctor made that very clear to me from the time I was a teenager. He even called my first OB/gyn when I was have my first baby and made that very clear to him.

I have Horner's and my injury is I guess considered severe but there is no way I could stand BP or IV. There is a higher risk for infection. The veins in my arm are smaller and I somehow feel if a vein is blown I have enough problems with that arm I don't need to invite anymore.
We have an FAQ section on our website here is the response on medical treatment for non bpi surgery, etc.

What does my doctor and the hospital need to know about my bpi prior to a non bpi surgery?
Make sure you talk to the anesthesiologist prior to the surgery and stress that neither arm should be rotated away from the body (the usual position, particularly if it is abdominal surgery is to rotate the arm out about 90 degrees). Some even position it over the head, which is a real "no no" for us. Ask the anesthesiologist to tuck the arm to the side.

Also if there is Horner's Syndrome present, this is also critical, as one pupil will be smaller than the other which could lead them to think that there is something else happening (like brain damage) when it is not. Make sure they look carefully prior to the surgery to determine any differential in pupil size and iris color.

Do not let them take blood pressure or put the IV into the bpi arm under any circumstance. False readings can happen and the arm can be injured further.


Most medical professionals have limited knowledge on bpi and the care and treatment of adult/obpi .... we all know most have no idea what we are talking about.

I had surgery a few years ago and I spoke to the surgeon about my arm. He had my arm banded so no one would take blood or insert IV while I was out. This caused a lot of questions because they thought I had a breast removed and that was the reason for the caution with my right arm... they were so confused....

I never know when I will get a zinger or shocks or spasms in my arm... I can't imagine what I would feel with an IV in my arm. I can't stand someone to tap me on the arm while talking to me imagine a bp/iv... ugh!

Be strong and them them this NO WAY... remember you know more about a bpi arm then the average nurse or tech and in fact most medical personnel except for bpi specialists.

I have had surgery and three babies and never had pressure or IV on my right side.

Hopefully you won't have any IV's or drugs and your delivery will go quickly and smoothly.

Kath adult/robpi
Kath robpi/adult

Kathleen Mallozzi
User avatar
brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Traci--Veggiebug having your baby soon?

Post by brandonsmom »

I am not bpi but when I had my bpi baby, nearly 8 years ago....I was so swollen from pregnancy induced hypertension that they took my blood pressure on my leg. Maybe this is an option for you. Never would I let anyone insert a needle into my son's BPI ARM.......just too high of a risk for infection. Gayle
User avatar
veggiebug
Posts: 257
Joined: Wed Mar 03, 2004 8:47 pm
Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention.
Location: Williamsport PA

Re: Traci--Veggiebug having your baby soon?

Post by veggiebug »

Wow Gayle, thanks I never thought of that. Just in case I have trouble with any nurses or anyone and they insist I need it, I can't make that suggestion. So far everyone has been understanding, I've only been really questioned to the point it made me wonder if I'd have trouble with the nurses just this past week.

Does anyone know of any official Dr. websites with information to back up this information? So, when I go in and have medical information to back me up they may not be as quick question me.

And it's kind of odd to think that if someone goes through surgery for breast cancer they wouldn't think twice about no IV's and BP. However, they seem to downplay our situation at times like we're making it up.

It would be easier if I knew the extent of my injury, but I truly don't know. And I don't imagine I can find out before the end of this week.

Thanks everyone for the ideas. And I'll let you know how I make out.

-Traci
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Traci--Veggiebug having your baby soon?

Post by Carolyn J »

Traci,
May I suggest printing out Kath's post as well as Gayle's, maybe printint the whole page with the Ubpn's Logo at the top
Carolyn J
Carolyn J
Adult LOBPI
User avatar
Tanya in NY
Posts: 935
Joined: Mon May 03, 2004 10:51 am
Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
Location: NY State
Contact:

Re: Traci--Veggiebug having your baby soon?

Post by Tanya in NY »

Well, Traci,

As the mother of a child with a ROBPI, and as a labor and delivery nurse, I would not take a BP or start an IV on a BPI arm if a person tells me they have a BPI on that arm. I do not allow BP's, IV's, immunizations, or bloodwork on my daughter's BPI arm and she does not have a global palsy. It is more convenient to have a blood pressure taken on one arm and the IV on the other arm, but you can take the BP on the same arm as the IV. Keep in mind that the IV has to be a really good IV (it should not be in the back of the hand or a "positional" one that only works when you hold your arm in a certain position) because then taking a blood pressure on that same side can cause more difficulty with that IV. You can always ask to get an IV in your upper arm (I know, it doesn't sound like too much fun, but it can be done by a trained nurse, CRNA, or anesthesiologist), then the BP can be taken in your forearm instead of your upper arm and it won't be such an issue.

Good luck with your delivery.

Tanya in NY
Amber's Mom, ROBPI, 3 1/2 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
User avatar
veggiebug
Posts: 257
Joined: Wed Mar 03, 2004 8:47 pm
Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention.
Location: Williamsport PA

Re: Traci--Veggiebug having your baby soon?

Post by veggiebug »

I just wanted everyone to know that I'm being induced on Monday due to the baby being bigger and also I have too much amniotic fluid, and that's not good they tell me.

But anyway, I just wanted everyone to know and I'll be in touch as soon as I can with pictures and details. Till then, Thanks everyone for all your past support and the future support I know I'll be asking for at times!!!

-Traci
Karen McClune
Posts: 746
Joined: Wed Sep 10, 2003 4:58 pm

Re: Traci--Veggiebug having your baby soon?

Post by Karen McClune »

Traci,

The best of luck on Mon. We will be thinking of you and keeping you both in our thoughts.

Ryan asked today if you had the baby yet, will have to call him back and let him know.

Lots of love and hugs,

David, Karen and Ryan
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Traci--Veggiebug having your baby soon?

Post by Kath »

Traci
My thoughts and prayers are with you all...
Can't wait to hear all about your bundle of joy...

Hugs to you all
Kath & Ralph
Kath robpi/adult

Kathleen Mallozzi
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Traci--Veggiebug having your baby soon?

Post by Carolyn J »

Traci,
You and Jack will be in my prayers..& Jon too!!..on Monday.When you do post tell us what you did re IV's & BP"s, Okay?
HUGS,
Carolyn J
"curious/nosy/bossy"self- adopted gramma to Jack
Carolyn J
Adult LOBPI
Locked