Has anyone had to be care flight to their AVM specialist?
What is the back up plan while away from the doctor during travel, in case of an emergency?
I wouldn’t want anyone inexperienced treating the AVF in case of an emergency.
Hi Dionne,
When we travel, we bring a copy of the films from my daughter’s AVM – the MRIs, CTs both pre and post-surgery (crainiotomy). Our neurosurgeon has been good about recommending facilities. However, we’ve only ever travelled within the US to date.
I don't know the location of your AVM or what the risks are in relation to a rupture so I'll tell you my son's situation, the precautions in place for him and you can take from that what is applicable to your situation. First off we are located in Australia but will not travel out of the country until his AVM is completely gone because we wouldn't be able to get insurance for him and he is at high risk of a rupture that will most likely prove fatal.
Telephone - you can have your line (land and/or mobile) registered so that if there is a power outage or connection difficulties you are prioritised.
Ambulance - you can register details with the ambulance. They have a copy of Jack's scans, medical reports and contact details of his specialists. If a call comes in to them the caller simply needs to advise his name, his registered address (which is home), his location and that it is a suspected AVM rupture. He is listed as a Code 1 so takes immediate priority. A doctor comes online with the paramedics and advises them what to do to assist Jack whilst liasing with Jack's specialists.
Medical Records - Jack has a medical alert bracelet that he wears when he is a distance from his hospitals. Hospitals owned by different companies have different computer systems so they may not be able to access his scans online and would have to waste precious time taking new ones. The bracelet we have for Jack has a USB in it that can be plugged into any computer anywhere in the world and there is no need to download software for it to be viewed - it just pops up. It can only be viewed on the computer, not stored so as soon as the chip is removed from the computer his information is also removed thus protecting his privacy. You load the information onto your own computer and then onto the chip and the information can be altered, added to, etc. at any time. This also means that if you lose the bracelet you can easily upload the information onto a new one. It has a big memory and can in fact easily store the entire family's medical history. Jack's medical history, all scans, reports and medical team info are on there. The one we selected for him is a fabric one with velcro so it will keep fitting as he grows and he can even shower or swim with it on. This way we don't have to carry his scans around with us and worry about losing them.
Hospital - If Jack is stable he would be taken to the nearest hospital with a neurological unit. If not he would go to a nearer hospital and the neurological team would travel to him. As long as you have the contact information of your specialists the doctors tending to you will contact your medical team and/or bring in others who are equipped to treat you.
Jack will also be going to camp later this year and he will have an additional bracelet for night time that if he has a problem he presses a button and it calls the teacher's telephone so they know to come to him. Still investing the best option for that. With these precautions in place he can go on about the business of being a little boy and experiencing all that a little boy should while giving us peace of mind that should the worst happen all that can be done has been and will be.
If you are interested in the bracelet I got it from this company and I cannot say enough good about it. This is also the only company I found who had something that would fit a child. http://www.usbmedichip.biz/index.html