Monday, March 24, 2008

The ER - again.

Hi Moms,

Just a note to add to the information already provided on ER visits.

• Be prepared to have to explain just "how long he has had hemophilia".
Do this without anger or frustration - right or wrong you may vey well find there are medical folks out there that know "NOTHING" about bleeding disorders, including the inheritance aspect!

• If asked to leave the room so an iv can be started - don't be afraid to refuse. This is your child and it is your right to be there.

• Share w/ the med staff what you know:
- the best site to try for a vein
- your 3 stick policy (if someone on staff can't setup your child in 2 tries, someone else has to be called in. We often would request the IV team on call)
- that you are going to pull out the bubbles as this quiets your child

• Point out the "Treat a person w/ Hemophilia First" poster in the waiting area if you are sitting for more than 15 minutes before you are triaged. If there isn't a sign in the ER let us know, there will be one the next time you have to "visit".

• Present an "in charge and in control" demenor to the ER staff. They listen when you speak with a sense of knowledge and authority. Never be afraid to tell them you are taking your child to another facility if the care is not up to your standards. Call your insur. co. from the waiting room or outside on your cell phone and let them know what is happening. They want your child treated quickly to avoid costly complicaitons as much as you do!

I know many moms can add to this list - so come on ladies - let our new moms know what to expect and what to do!


Emergency Room Visits

My son has Hemophilia ..he is factor VIII severe less than 1%
I have his factor and doctor orders with me
We need to be seen right away
This is my opening line at the Emergency Room

I have not had to visit the Emergency Room for some time and I do not miss that
Being prepared for the visit makes everyones life less stress full
Make sure you inform them as you walk in the door that your child has hemophilia
Discuss with your treatment center the best procedure for you at the emergency room
Ask lots of questions so you can focus on your child at this time and not on learning the hospitals procedures-- such as bringing your own factor.

Does anyone out there has some suggestions or emergency room stories they would like to share?