Make Your ER Visit Efficient and Effective When Dealing with Hemophilia

Edited by Lor777, Charmed, Eng

You may visit the ER frequently during the first few months or even years after a hemophilia diagnosis. The ER is the place to go when your hemophilia treatment center is closed, usually at night or on weekends, or when you have an emergency. Even if you spend many nights or weekend days at the ER initially, please don't think your life will always be like this! Soon your life will be like anyone else's, and instead you will be complaining about the time you spend at Little League, piano lessons, soccer practice, and the orthodontist.

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Bleeding disorder1.jpg

The main reason you go to the ER so frequently when your child is first diagnosed is that you are inexperienced at detecting bleeds or giving your child factor. You go to seek advice or have someone give a needle stick. As your child grows, the frequency of visits may decrease! You may learn or seek the assistance of treatment center experts on how to give him an infusion, and your life may truly seem normal again. Initial trips to the ER after your baby has been diagnosed will be tiresome, particularly if you are not familiar with hospital procedures. Even knowing procedures will not always prevent long waits and sometimes frustrating infusions. It will help you to know what to expect beforehand, so you don't feel like you are being told to do something blindly, not understanding why you are doing it.

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The ER System


The most important thing to know is that hospitals operate as triage systems. Triage means that patients are seen on a priority basis, not first-come, first-served. When you arrive, you will enter the hospital ER waiting area and meet with the triage nurse, who will record on an admittance sheet your child's name, the diagnosis of hemophilia, and a description of his injury. The triage nurse will also ask if your child has allergies to any medications and whether his inoculations are current. Your child may get a hospital band for his wrist, printed with his name and the date. You may need to fill out an insurance form or see an admitting processor who will probably want to check some information for accuracy, such as your pediatrician's name, your insurance company, your home address, and your child's birth date.

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If you choose to us the ER in the local hospital, not a hemophilia center, it will be best for you to have a protocol in place before you visit. You can have your hemophilia treatment center staff provide in-service training to educate your local staff and provide phone numbers to keep the lines of communication open. Don't wait for the first emergency visit to the local hospital to educate staff. Planning and teamwork will help ensure that your local hospital can provide care for you.

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The admitting paper goes with you to an examination room, where you will be asked to remove your child's clothes. He will be examined with a stethoscope and have his blood pressure taken. His weight will be recorded in order to calculate his factor dosage. The rest of the exam-- perhaps checking his eyes, ears, and abdomen--is to assure staff that there are no other complications. A blood pressure reading is important; after the infusion your child's blood pressure may be taken again to note any changes in case he has a reaction to the factor.

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After his exam, you may return to the waiting room. The wait may be long, so bring supplies with you: diapers, toys, juice or formula, snacks. Fridays and Saturdays are usually crowded and require long waits. When you are called, you will be sent to a treatment room, which may or may not be private. You will wait here until a doctor arrives. After introductions, the doctor will ask about your child, probably repeating questions already asked: What kind of hemophilia does he have? How did the injury take place? Is he allergic to medicines? Has he had all his immunizations? The doctor may examine your child's ears, eyes, and abdomen. If your child has a head injury, the doctor may spend a lot of time checking pupil reactions and looking for fluid in the ear, which could indicate serious damage. The exams don't hurt your child, but your child (especially if he is under 3) will probably cry from fear of having a stranger touch him, of being in a strange environment, or simply from his injury.

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A doctor may seem to delay treatment, asking questions that don't seem relevant to the problem itself: When did you first learn your child has hemophilia? When did he get his first bleed? Or, after examining your child, the doctor may disappear for what seems like a long time--15 or 20 minutes. If this happens, ask another doctor or nurse directly what is causing the delay.

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After your child has been examined, the doctor will order factor, if you did not bring your own, and prepare the infusion. Your child will be infused. After the infusion, the doctor will want to see if your child has a reaction to the factor, and he may be examined again briefly. If there has been a severe joint injury or any kind of head injury, the doctor may request an x-ray or CT scan. Unfortunately, this will involve more waiting.

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Parents report that the first ER trips are usually very long, unless the ER is not crowded. You can expect to spend several hours on your initial visits, until you learn the ropes.

Don't Learn the Hard Way: PREPARE FOR YOUR ER VISIT


You can learn to make the ER experience more effective and positive. You can learn through trial and error, or you can take advantage of the knowledge of generations of parents before you. Parents usually complain of two things at the ER: long waits and physicians inexperienced with hemophilia.

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So before you go to the ER, phone the hematologist-on-duty to discuss your child's injury, symptoms, and treatment. The hematologist can then alert ER staff and get your child's records. He can order factor so that it is waiting for you, or he can tell the staff that you are bringing your own. But beware: Most hospitals will not normally carry factor, either your brand or in the amount you need. It's important to know this well before you need to go to the hospital. If the hematologist is at the hospital, he or she may even want to meet with you and your child. If your hospital does not have a hematologist-on-duty, call the ER directly and tell them to expect you.

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Next, bring factor with you if you store it at home. When you arrive, give the triage nurse all your updated information, including allergies, immunization dates, insurance carrier, and insurance changes. Don't wait to be asked. Also make sure the nurse writes it down! Sometimes a triage nurse neglects to write "hemophilia" on the form. The doctor will read only "knee injury," and your child may be placed low on the priority list. It's a good idea, too, to ask the triage nurse to review the admittance sheet when it is completed.

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How to Make the ER Visit Efficient and Effective

  1. 1
    Phone the hematologist on duty before you go.
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  2. 2
    Discuss the injury, symptoms, and treatment.
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  3. 3
    Have dosage recommendations, a letter from your hematologist, and ER treatment literature.
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  4. 4
    Provide the triage nurse with updated information about allergies, immunizations, and treatment.
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  5. 5
    Demand that your child be seen quickly and explain why, if you think he is bleeding in a dangerous area.
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  6. 6
    Postpone all radiology exams until your child is infused.
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  7. 7
    Offer to get the factor while you wait.
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  8. 8
    Mix the factor yourself.
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  9. 9
    Ask for a pediatric nurse or the covering hematologist if the emergency physician seems unsure.
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  10. 10
    Record your child's name in the ER log book.
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  11. 11
    Be prepared to wait, just in case.
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If you find yourself waiting an hour when your child has a head injury, joint injury with swelling and pain, or bleeding into the abdomen, you have waited too long. Go to the triage nurse and demand--really demand--that your child be seen quickly. Show the nurse his Medic Alert bracelet, which should have "hemophilia" inscribed on it. Show a letter from his physician or highlights of an article on emergency hemophilia care. Raise a fuss, get a little crazy, but get their attention!

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Tips Tricks & Warnings

  • Remember, ER staff handle all kinds of accidents, injuries and illnesses.
  • Hemophilia may be something new to them.
  • The ER staff should know that you are an expert, too.
  • When you learn to infuse your child yourself, your time in the ER will be drastically reduced.
  • Shorten long waits by learning about hemophilia, knowing ER procedures, and being proactive.

If you have problems with any of the steps in this article, please ask a question for more help, or post in the comments section below.


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Article Info

Categories : Blood Disorder & Issues

Recent edits by: Charmed, Lor777

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