The sickle cell caregiver’s guide to hospital admissions and inpatient care
Fact-checked by Note: Oluwatosin Adesoye is a practicing physician living with sickle cell disease and is a columnist for Sickle Cell Disease News.
A visit to the emergency room is often overwhelming for people living with sickle cell disease and their caregivers. However, when that emergency visit turns into a multi-day hospital stay, many caregivers find themselves navigating unfamiliar territory. The fast pace of the emergency department gives way to a more structured inpatient routine, making the transition both emotionally and physically exhausting.
As a caregiver, your role does not end once your loved one is admitted. In many ways, it becomes even more important. This guide may help you understand your inpatient medical team’s roles, support safe pain management, and recognize early signs of serious complications before they become emergencies.
What to expect during a sickle cell hospital admission
The first few hours after arriving on the hospital floor often involve repeated assessments, introductions, and a new patient care routine. Although these steps may feel repetitive after a long stay in the emergency room (ER), they establish a safe baseline for treatment.
Familiarize yourself with those initial assessments. Nurses will begin regular monitoring of vital signs, including temperature, blood pressure, heart rate, breathing rate, and oxygen levels. Intravenous fluids may be started, and blood tests will be performed to monitor hemoglobin levels and assess organ function.
Share your loved one’s home routines and preferences with the nursing staff. Let them know about allergies, difficult intravenous access, preferred veins for blood draws, comfortable positioning, or any previous challenges with venous access. Providing this information early can make the hospital stay safer and more comfortable.
Finally, create a bedside command center. Keep phone chargers, a notebook for tracking symptoms, medications, pain scores, and questions, and an easily accessible list of family contacts and comfort items within reach.
Understanding and managing the inpatient team
Hospital care involves several healthcare professionals, each with distinct responsibilities. Understanding their roles can improve communication and help you advocate more effectively for your loved one.
- Attending physician: Oversees daily medical care, treatment decisions, and discharge planning.
- Floor nurse: Administers medications, monitors symptoms, performs assessments, and communicates changes to the medical team.
- Hematologist: Provides specialist guidance on sickle cell disease, including pain management, blood transfusions, and the treatment of complications.
One valuable habit is to be present during nursing shift handoffs when possible, because your loved one may be too tired to catch any problems or ask needed questions. Morning and evening shift changes allow nurses to review the patient’s progress and treatment plan. If appropriate, politely mention any worsening pain, medication concerns, or new symptoms to ensure nothing important is missed. Likewise, report any symptom that is not easing or any new symptom that differs from the one(s) that led to hospitalization.
If several family members are involved in your loved one’s care, appoint one primary spokesperson. Having a single point of communication helps prevent conflicting information and ensures consistent discussions with the healthcare team.
Monitoring pain management
A severe pain crisis, also known as a vaso-occlusive crisis, often requires opioid medications that may be delivered through a patient-controlled analgesia (PCA) pump.
A PCA pump allows a patient to safely administer small, pre-programmed doses of pain medication with the press of a button. The device has a built-in lockout interval that prevents accidental overmedication while allowing effective pain relief. Never press the PCA button on behalf of your loved one.
Keeping a simple pain log can provide valuable information during daily medical rounds. Record pain scores, PCA use, any breakthrough medication given, and whether the treatment adequately relieves the pain.
If pain suddenly worsens despite the current treatment plan, ask the hospitalist or hematologist to reassess the patient’s pain management. Many hospitals have prewritten plans outlining when medication doses should be adjusted or when alternative therapies should be considered. Reviewing these plans early can help prevent prolonged, uncontrolled pain.
Preventing acute chest syndrome and infections
Pain should never be the only focus during hospitalization. Sickle cell disease can affect multiple organs, and complications may develop even while pain is easing. Acute chest syndrome and infections are two of the most important complications caregivers should watch out for.
Supporting lung health
Acute chest syndrome prevention is important because it is a potentially life-threatening complication. It may present with chest pain, fever, cough, difficulty breathing, or low oxygen levels.
During hospitalization, the care team may recommend measures to promote lung expansion and support respiration. These may include:
- using an incentive spirometer as directed, often about 10 times every two hours while awake
- performing gentle deep-breathing and coughing exercises regularly
- sitting upright and changing positions frequently to promote lung expansion
Checking for signs of infection
Because many people with sickle cell disease have reduced spleen function, they face an increased risk of developing serious infections. Notify the healthcare team immediately if you notice:
- a fever or sudden spike in body temperature
- rapid, shallow, or difficult breathing
- a new or worsening cough
- unusual drowsiness or extreme fatigue
- headache, abdominal pain, or painful urination
Early recognition and treatment of infection can prevent serious complications.
Ensuring regular movement
When approved by the healthcare team, encourage your loved one to sit up in bed, perform gentle leg exercises, or take short walks around the ward. Regular movement promotes healthy circulation, supports lung function, and reduces complications associated with prolonged bed rest. Activity should be tailored to your loved one’s condition and comfort level, particularly during a severe pain crisis or if complications are present.
Communicating with the nursing staff
Having prepared phrases can make stressful conversations easier. Consider saving these sample scripts on your phone for quick reference.
Sample script for nurse shift handoffs
“Hi, I want to review my loved one’s pain log with both of you before the shift change finishes. Over the last few hours, their baseline pain hasn’t been adequately controlled, and they’ve needed three breakthrough doses. Could you make sure the incoming team is aware of this and reviews their pain management plan so we can address the worsening pain promptly?”
Sample script for addressing an unexpected symptom change
“Thank you for checking in. I’ve noticed that my loved one’s breathing has become more shallow, and their temperature has gone up slightly. Could you please assess them and let the medical team know? We’re concerned about possible respiratory complications and would like to make sure their current care plan is still appropriate.”
Essential next steps for families
Sickle cell hospital admissions can feel overwhelming, but caregivers who stay organized, communicate clearly, and monitor for changes are valuable partners in delivering safe, effective care.
Take these three practical actions right now to optimize your bedside advocacy:
- Confirm the primary team lead: Ask your floor nurse today for the name of the attending physician overseeing your loved one’s care, and ask whether a hematologist is involved in their inpatient sickle cell care.
- Ask about an incentive spirometer: Ask the care team whether your loved one should use an incentive spirometer and, if so, how often it should be used. If recommended, help your loved one to remember to use it as directed by setting up a simple recurring phone alarm.
- Draw a simple tracking chart: Use your notebook to draw a quick, four-column chart with lines for the date, time, current pain rating (1-10), and any notable changes or side effects to show the doctors during morning rounds.
No caregiver can control every aspect of a hospital stay. However, staying informed, asking questions, documenting important changes, and speaking up respectfully can make a meaningful difference in the quality and safety of inpatient sickle cell disease care.
Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
