Emergency Rooms are like Vegas minus the fun. You walk in and lose all track of time. Is it day or night, who knows after so many hours? At some point I noticed they stopped having clocks in the rooms, well played administrators. It’s the last place you want to be yet the best in times of crisis. How can you make the best of a bad situation? Over the years, you start to figure it out.
My first suggestion is to make sure you call your hematologist/nurse coordinator before heading down. Your doctor or nurse should call the ER so they are expecting you, minimizing your wait time. When a person with hemophilia is having a bleed, they need their clotting medicine as soon as possible. If you have to go to the ER for an infusion, you should not be waiting in the ER for hours. I know some institutions are better than others about this, but I urge you to make arrangements with your doctor so when you arrive, they will be ready to get you in as quickly as possible. This should be a standard protocol for every visit. We are fortunate that our HTC/Children’s Hospital gave Oncology/Hematology patients a card to show upon arrival which moves us to the front of the line. I call it our “Fast Pass”. Of course, this is not the norm, but shouldn’t it be? Advocate for change if your hospital isn’t understanding the urgency of treating patients with a bleeding disorder.
Many ER visits are due to children with a fever and a port-a-cath, the concern being sepsis (a potential life-threatening blood infection). This is yet another example of time being of the essence. Once a patient goes septic, it goes real bad, real fast. It’s not something to take lightly. My son went from having chills while we were shopping at Target to being unconscious with a 107.5 degree fever within 40 minutes, the time it took us to drive to the ER. Be assertive if you feel you are being dismissed; however, never be rude. There is a big difference. And trust me, rude or hostile doesn’t make the process go any faster.
Plan to be there for a while. Hope for the best but expect the worst. Since we were frequent fliers at the ER, due to my son’s inhibitor and port, I kept a bag in my car. It contained toiletries, snacks, a sweater, and pjs in case we were admitted. Oh, and don’t forget the phone charger! I made a document listing all of his medications, doctor names and numbers and insurance info. I also included his medical history with surgery dates so I could just hand it to the nurse rather than reciting it every time. Big time saver.
If possible, have a plan in place before going in. What exactly do you need? Are you there for an infusion? Pain management? A blood culture? When the nurse comes in, tell him/her what the typical protocol is for a person with a bleeding disorder. You are not telling them how to do their job, you are just letting them know what needs to happen first. Remember, not everyone is used to treating someone with a bleeding disorder. When it comes to waiting for medication or later discharge papers, be persistent. (Every nurse is hating me right about now.) Sometimes you get lost in the shuffle and they think someone else brought it to you. They have a lot going on and, unfortunately, things can fall through the cracks. Remember, polite yet assertive. If you have a rule about pokes (times a nurse tries to get an IV in), stick to your guns and offer solutions. No one knows your child’s or your veins better than you. It is helpful to tell them where exactly they should poke, and any other helpful tips. (“Be careful that vein rolls”, or “Don’t use a j-tip or it will disappear”, etc.) You’re a team. Collaborate. They are your friend and there to help.
Lastly, bring entertainment. I know this is the last thing on your mind, but boy, does it help. An IPad with movies or a handheld game can really save the day. Most ER visits go on for hours and hours. Our shortest visit was three hours and that was only after years of refining the process. It only happened once. I was so thrilled, I think I may have kissed the nurse on the way out.
I hope this is helpful. There are many other tricks you’ll learn. Coordinate with your HTC to make future visits go smoothly. Being prepared is always best if possible. And don’t forget to try to be calm. The staff react much better to a calm, assertive parent who is knowledgeable rather than a crazy, wigging out mom who appears to need her own room. Or so I’ve heard.
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