Anna's visit to ER

[Svetlana Finley]

Anna had unexpected ER visit last night. She started running fever i made phone call to doctor on call David. He decided to save our time and send us to local ER. Why sometimes i don't listen to my self? I was thinking what is the right choice to take her in. From one view i didn't wanted to drive an hour to children's hospital to her her cultures done. My doctor was saying the same thing and it was ok to go to local hospital even in the past we had problems there. They don't know Anna's condition apparently they don't know how to take culture (figure that one).
When we got there they took us straight to ER room, but when we saw the doctor J. (she always misdiagnosed Anna before) there, Anna's eyes went BIG and was trying to whisper IT IS HER AGAN. I told Anna lets just give her a chance she will contact our doctor and everything will be ok.
Because of Anna's fever our dr. David wanted to get cultures done one dose IV antibiotics and then go home. Anna's line has 3 lumen and each of them has to be cultured. When nurse came with one bottle i told her " Aren't you will do culture from each lumen?" her answer was "NO doctor J ordered only ONE it is one line and just has 3 ends, it will be ok, there is NO difference". Anna got her antibiotic and we were released to go home to finish her medication orally at home. This morning i give her first dose and she broke up in HIVES, i had to page dr David. We talk for awhile tried to decide what medication she should take untill we get results, so i explain him what happen in the ER he felt so bad that he recommended me go to local ER. Yes they were supposed to get Anna's culture from each lumen, so we know where is her infection. The results that we are waiting for will not be correct.
Now that she is already taking antibiotic, there is no point to do another culture, so Anna will take antibiotic for 6 days.

[Amy Swarbrick]

Ya, I wouldn't trust our local hospital either. The hemos that treat Brody are an hour away too! Your right though, some times you have to just trust your instincts. Hope the antibiotics work!

[Cheryl Biermann]

Our doctors did the same thing as Lindas. In fact, the only time we had "permission" to use a local hospital was while on vacation! We even had perscriptions for his doppler machine (blood pressure), when he was a baby, so the airlines wouldn't think we were carrying a bomb! I know it is hard to do, but next time you get Dr. J, ask for someone else, we never had to request another doctor, but we certainly had to insist on different nurses occassionally. (There are some people who are just uninterested in learning about something this rare and how these patients have there own set of rules that don't always follow "hospital procedure"). Good luck, I sure hope she feels better soon, give her a big hug for us.

[Linda Burke]

So sorry that happened! On vacation, we always carried a travel letter from our doctor's office- on their official office letterhead- describing aHUS in medical terms and outlining EXACTLY what the proceedure was to be in the event of an unexpected visit to the emergency room. (As in.... draw these specific labs, draw (and pack) the lumens with this procedure, and so on). Sure would make things a lot easier when you have to go to a different hospital, when your normal doctor wasn't on call, etc. In our case the nurses seemed relieved to have directions to guide their work, too! Perhaps it's something to ask for and keep on file - it sure gave me peace of mind for our family!