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Ten Things I’ve Learned in the Hospital
Beep. Beep. Beep. It’s the middle of the night and the nurse has to come reprogram our pump. The
noise has become so familiar that I hear it in my sleep. Sometimes I think I’m hearing phantom beeps.
Here I sit in the hospital yet again reflecting on how "Hospital Wise” I have become in the past four years. Mostly I’m horrified by how little I knew before my husband and I adopted our sixth child. Manny is five and very medically complex; he spends a lot of time inpatient. Because of that, I’ve discovered a few things.
Here are ten things I’ve learned in the hospital.
1. Be organized
Why? The moment I hear the words "admitted to the hospital,” my brain goes into overload. I’ve come to accept that about myself. Knowing I have everything I need to know organized and recorded on paper helps me cope.
How? I started by capturing everything I could about my child’s medical condition. At first this seemed an impossible task. But I started with the current information and worked backwards. Everything went on a table within categories (see sample form and Oley’s Travel/Hospital Packet). This was a huge undertaking to start, but once it was down it became easy to update it periodically, like when a medication was added. I keep a copy of the most current version with me. I also e-mail it to myself so I can access it at all times.
2. Understand the admission plan
Why? Each admission is different. Each time, the goals will be slightly different, as will the plan of care and the discharge plan. If I am not clear on any of these, I ask for clarification. Some clinicians offer this information up front, with something such as, "We plan to keep you here another day or two until your pain is under control.” But others forget to keep us in the loop.
How? Ask. "What is the goal of this admission?” or "What is the discharge plan?” or "What is the general plan of care for this admission?” Sometimes we think we know but when we hear it, it is slightly different than we expected. And by asking, we also help the clinician think it through and clarify it for him- or herself as well.
3. Stay on guard
Why? Every day, mistakes happen. We live in an imperfect world. People who go into medical professions do it because they want to help. No one goes to work thinking, "I want to make a mistake today that might cost someone their life.” But every day, it happens. As people who are constantly reliant upon medical professionals, we cannot be afraid of the next mistake, but we can be vigilant.
How? The hospital is where I feel most vulnerable. At the hospital, the odds of mistakes increase due to the number of people who are involved in our care. Also, due to the nature of the "practice” of medicine, often the people caring for us may have done this procedure only rarely (if ever) before. It is up to us to understand every procedure being ordered, every medicine being administered, and every test being run. It is up to us to understand how to become advocates for our care. It is alright to ask questions. It is OK to seek clarification. It is good to speak up when something is not right. We are the last line of defense.
4. Know baseline
Why? We must know what is "typical” for the patient so "NOT typical” can be identified.
How? Mental status, emotional level, weight, vitals, etc. can be so variable from one person to the next. If we have a good handle on baseline, we can better advocate for the patient. Once when my son was non-responsive in ICU, the doctor asked if this was his baseline. I was able to show her a video of him playing, talking, and interacting, and this helped her know something was very wrong with my son. She knew we had a long way to go to get back to baseline.
5. Be focused on the big picture and patterns
Why? Details. Details. Everywhere. It is easy to get lost in the details and not see the big picture. Noticing patterns and trends helps us know what is in and out of range for the patient.
How? Imagine you are on a pulse oximeter. Say the reading is 99 percent and then it goes to 97 percent. Is that significant? Probably not. If we watch the machine and notice every percent change, we will drive ourselves crazy. But say the heart rate has been staying in the 80–90 beats/minute range for several hours and then all of a sudden it goes to 110 with no explanation (like exertion). This might be something to notice. If I notice it happened fifteen minutes after a certain medicine was given, then I might want to watch the next time the medicine is given to see if the heart rate does the same thing. If so, there might be a pattern developing. I personally keep a daily log of events and I log by "exception,” meaning that I only record things that are deviations from baseline.
6. Sequence and timing matters
Why? We need to handle the steps right in front of us. We can be planning for future steps, but it might not be time to share all our cards just yet.
How? Discuss the current situation and the next few steps, not fifteen steps down the line. For example, if Manny has just been admitted to the hospital, I don’t start asking about when we will be discharged. I was talking to a fellow mom of a complex child. She was very opposed to the treatment she thought the doctors were going to propose and wanted to immediately tell them that she would not do it and why. I suggested another approach. How about ask what their thoughts were for treatment? Ask them to explain the options and the one they felt was best. Ask when they need to know your decision. Go home and regroup. She did this, and the doctors made several suggestions that were actually workable. Rather than being confrontational for no reason, this mom was able to be collaborative. There was no need to pounce on them and tell them "the way it would be.”
7. Be mindful of the chain of command
Why? Everyone at the hospital has a specific set of skills. They have been hired to do specific tasks. Some job descriptions overlap and some people will help even when it is not their job. However, many are working at or beyond their capacity. If we ask a nurse to do the job someone else should be doing, we will be taking time away from his or her other patients. For example, one day my son was in severe respiratory distress. I pushed the call button but no one was available for quite some time. Why? Our nurse was delivering coffee to the family of the patient next door. It was sweet of her to do that, but it should not have interfered with patient safety. Or how about arguing with the nurse about a prescription when we really need to be addressing that with the doctor?
How? Hospitals may use different titles for positions, but every hospital has a similar hierarchy. Take the time to learn who does what. If you need an extra pillow or to know where the coffee pot is, an aide might be your best resource. If you are having issues with your nurse, you might need to ask for the "charge nurse” or the "nurse of the day.” I have spent a great deal of time asking personnel what job they do and what their primary roles and duties are. We just never know when we will need help.
8. Understand "Hospital Time”
Why? If we are stuck to certain times and routines in our lives, the hospital might be a difficult place to be. For example, if I usually eat breakfast at 8:00 am but my tray doesn’t arrive until 8:30, does that really disrupt my day? The staff is working to stick to schedules best they can, but a lot of unexpected issues arise. One time, my husband went with me and Manny for a procedure that was supposed to start at 9:00 am. By 9:15 am he was antsy and I realized I had never explained "hospital time” to him. "They will get to us when they can. The schedule is based on priorities. They know he is here. We just have to go with the flow.” Turns out the kid ahead of us had "coded” during a procedure so they were busy saving his life. And here we were sitting comfortably in pre-op.
How? Shifting from a "type A” personality isn’t easy but it is necessary. If we are rigid, inflexible, and demanding, we will be emotionally distraught and miserable over things we cannot control. If we have been understanding and then something arises where timing is critical (say a respiratory issue or cardiac symptoms), the staff is more apt to hear us than if we had been demanding all along.
9. Exchange, don’t demand
Why? We need to create an atmosphere of collaboration. I know things the staff needs to know. They know things I need to know. We both have pieces of the proverbial puzzle and we need to exchange.
How? It is all in the way we word things and the tone we use. Use a lot more questions than statements. "When and how will we know the treatment is successful?” versus, "I’m only going to try this for three days!” Find a way to word most things as questions. Use a tone that conveys genuinely asking, rather than frustration, doubt, or insincerity. I have had to practice this skill. Especially the proper tone.
10. Have emotional power
Why? We do not have the luxury to ever "lose it.” If we do, we lose all credibility. We could be kind one hundred times but if we lose it once, we will forever be remembered that way. Being demanding is the same. The staff might jump now, but what about next time? Those of us with chronic conditions need to consider that we will see this staff member again. We need them for the long haul and cannot burn bridges.
How? Being in the hospital is one of my most stressful times. Typically my child is very ill and I am feeling out of control. I am tired. I am frustrated. I am missing the rest of my family. And in this moment, I am also supposed to be kind and respectful. Even when I believe the wrong judgment is being made, I cannot ever become too aggressive. But at the same time, I cannot be too passive or hand over all say in my son’s care or refuse to speak up when the wrong call is made. Finding the way to be assertive is having emotional power.
We thank Beth for speaking at the Oley conference about advocating for her children and for summarizing her tips here. Please consider sending your experiences to Lisa Metzger, firstname.lastname@example.org.
Health History Form
Name Contact Info:Insurance and Number: Pediatrician: (name, number)
Social Security Number: Case worker: (name, number)
Date of Birth Home Infusion: (name, number)
Last Updated: date Pharmacy: (name, number)
Born: where, when
Gestational age: Delivery: Weight: Height: Birth Complications:Birth Tests:
Released from hospital:Notes:
Where lives, type of home, who lives with, pets, type of bed, sleeping arrangements, smoking/non, etc.
Daily Medicines/Treatments/PRN meds
Med Type (Started)Prescribed by Prescribed For Amount Times per dayLast Dose
TPN—cycled 21 hours/day (Hospital, stop each day 6 pm, restart 9 pm) Lipids M, W, F
1. Drug, reaction
Dates Reason Duration Hospital ICU Diagnosis, tests
Surgery Type/Reason When Where Doctor In/Out
Specialists First Visit Phone
Primary 4/10 XXX-123-4567Specialist 5/10 XXX-345-6789
PT—Location, phone number, therapist, times per week, duration
Nebulizer, pulse ox, oxygen concentrator, oxygen tanks, suction machine, CPT "the vest,” cough assist, g-tube pump, wheelchair (kidkart), power wheelchair, night leg braces, day leg braces (AFOs), TPN pump, glucometer, bipap/vent
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